My CarePage Blog From Room #311, Mattie’s Birth, The 9 Weeks that Followed, Diagnosed with PVL and Mattie’s 1 Year Update
DAY 1 – Monday February 7, 2011
10:13pm (I only know this because I look at my phone and not the clock on the wall that refuses to work)
I have been checked in since 5pm. So far blood work, IV placed in arm, 2 IV antibiotics, shot in the thigh, Jim says goodbye for the night. Welcome to my new life.The hardest part about today was saying goodbye to my home. I cant even begin to face the reality that I wont be back until Mattingly is born. I looked around as though it might be the last time I saw the house. Bye room, Bye bed, Bye kitties. I took Joba into his room for one last diaper change and read him my favorite book, Llama Llama mad at Momma. I read through tears just knowing that I would not be able to tuck him into bed or read his bedtime story, or check on him one last time before I went to bed, or whisper what I do every night… “I love you, Goodnight, Sweet Dreams, I will see you in the morning”.
He wont remember this but I will never forget it. No use crying what cannot be changed.
My perfect little girl. Perfect size, Perfect weight for a 23 week old baby. Saying prayers and holding on to faith. The sign in my room says “Baby Location: Belly”. Come on Mattie, lets keep it this way for awhile.
Day 2: Tuesday, February 8, 2011
Up, Down, Up, Down, Up, Down, Up, Down
Day 3: Wednesday, February 9, 2011
There is power in positive thinking and prayers. We are reaching out to you, our friends and family, now in a time of need.
As of Tuesday, my new permanent home is St. Joseph Women’s Hospital until our baby girl is born. I am leaking amniotic fluid and have been for the past 7 weeks. The doctors say that we are deifying odds in that she is still growing perfectly and has yet to make an appearance in our world. I am only 5 months pregnant (23 weeks). Nothing is certain at this point. She may be delivered today or weeks and weeks from today. The longer she stays inside, the better her chances are of survival. Everyday she stays inside is a blessing.
Through our faith and love, Jim and I are finding the strength to get through this. Day by day is how we have to take things. Her name is Mattingly and she needs your thoughts and prayers.
Day 4: Thursday, February 10, 2011
Feeling better in that, I have finally showered and have no IV in anymore. Looking forward to Jim and Joba coming tonight! Marie and Tonya came to visit. It was nice to see them and chat about nothing important. Jim brought be Chipolte!! Woohoo!!! Joba was cute although his outfit did not match today 🙂 He is still antsy when he visits and we have to limit them to 45 minutes. He looked tired today. I told Jim that tomorrow they need to have a normal night in, just the both of them. Heart breaking when they walked out the door. Joba turns to me and gives me 3 huge hugs, jumps off the bed and with a wave says “bye mamma”. My heart breaks a little everytime I see them leave. Hanging in there for now. Beginning to think that we may make it awhile like this, which is a good feeling. Jim’s text at 9pm: “There will be a day in the not so distant future when we look back at this time and realize this made us a stronger family. The 4 of us will get through this. I love you.”
Day 5: Friday, February 11, 2011
(partial email to friends)
Today was a good day. Jim has off on Fridays so we spent the day together and Joba went to daycare. It was great just having him in my bed, snuggling and feeling close to him again. He picked up Joba at daycare around 3:30 and brought him here and for the first time, he was able to last until 7pm!! We are trying to get into a schedule that fits. Jim’s mom and my mom are going to watch Joba one night a week so that way, Joba can go to bed at his normal time and I get to see Jim for longer than an hour. Mattie is still going strong. I cant wait for my ultrasound on Monday so I can see her again and make sure she is still doing good. I am still leaking fluid, but hoping that with as much water as I am drinking that my body somehow still produces a bit extra to make up for what is coming out. They say she can survive in there with no fluid but that her lungs wont develop properly, so that is a big worry right now for us. The hospital is not too bad. Room service whenever I want and someone cleans my room everyday. With as much crap as Jim is bringing me from home, it is starting to look like I live here. I guess it is my new home for now. The nurses are fantastic. No complaints so far! Today I downloaded skype and so did Jim, so it will be nice to be able to say good night to joba “in person” every night. I think the hardest part of all this is when they say goodbye.
Day 6: Saturday, February 12, 2011
Another good day. Skyped with Jim and Roo early am and then my sister and her clan around lunch. It was good to see them. I does not look like I will see Min, until after Parker is born. I cant believe that I am going to miss her birth. That makes me so sad. Joanna, Selena, Tracey, and Chris came by today. Jim and Roo came before his nap and then just Jim for a few hours this afternoon. Mindy sent over a ton of stuff for me. The best was the bedding!! I almost feel at home now that I don’t have hospital sheets! I started reading the preemie book again. I feel like the more I know, the more I can deal with everything that comes our way. I sent Jim home with the book so he can read up. I am nervous about the ultrasound on Monday. I will be by myself and that is scary. I wish we knew what time it was scheduled for so that way Jim can come… I need to ask again for a set time… So far Mattie is doing well. Felt her kicking for a good while today. They should be in soon to do the nightly heartbeat. Until tomorrow… Week 24… That makes me smile. Thank you God!!
Day 7: Sunday, February 13, 2011
Happy 24 Week Mark!!! Today started out good when a friend brought me some Starbucks Coffee:) It was AMAZING! How I miss good coffee. My mom is here now hanging out and we are getting ready to eat lunch. Jim and Roo will be here later.
Favorite text of the day from Rox: “Congrats on 24 Weeks! What a strong, resilient little girl your carrying 🙂 I am sure u r both already so proud of her!”
Yes – I am
Day 8: Monday, February 14, 2011
5:30pm – Had our ultrasound today. Everything the same no change. Not good, not bad, but still depressing just the same. I am not expecting a miracle, but I am still let down. I said as much to the dr and his response was “the miracle will come in the delivery room”. For just a moment, I felt despair for the first time in my life.
Headphones on. Dave playing. Time to regroup.
10:30pm – Jim surprised me with his shrimp and lobster scampi! I thought he was picking up takeout, but he said even though I am here he did not want to ruin the traditional Valentine’s meal. Yes, I cried. It is the little things.
Still regrouping, but doing better.
Joba dropped of his V-Day art for me 🙂
Day 9: Tuesday, February 15, 2011
Decided to start the day off by thinking about what I was most thankful for. Even though my list is very long, these made the top of the list today:
I am thankful for: Mattie still inside and having a strong heartbeat, Skype, Mr. Empanda Cuban Sandwiches that I just realized I could order every day from room service, an amazing husband, and last but not least a little boy named Joba Roo who calls me momma.
In other worldly news… I got WHEELCHAIR PRIVILAGES TODAY!!!!! I can go outside for 20-30 minutes a day. I can get fresh air and see the world!! Woohoo!!
Week 24 Milestone
So we have made it to week 24. We are very excited about this small feat. Mattingly continues to have a strong heartbeat and continues to kick and hit me throughout the day. The ultrasound yesterday showed my fluid level about the same as last week. I am a 2, I should be a 15. I continue to leak amniotic fluid, but have been drinking over a gallon of water a day to try to produce more. In the ultrasound, they looked to make sure her kidneys and bladder were still functioning and that my placenta and umbilical cord still looked good. We passed all tests. She looks very squished in there, with hardly any room to move. She has been breach as of last week and continues to take after her brother, Joba, who maintained the breech position throughout most of my pregnancy with him.
I had 2 rounds of steroids to help her development in case she is born early and just finished a 7 day round of 2 antibiotics that were part IV drip and part pill form. At this point delivery will happen if I get an infection (my temp is taken every 4 hours), I go into labor, I start bleeding, or she does not pass her 2 times a day heart monitoring tests. So far so good. No contractions or infections to speak of.
When I asked the dr yesterday if there was enough fluid for her lungs to continue to develop and grow, he did not have an answer. You cant see lung development from an ultrasound. She could stay put for weeks, but if her lungs are not growing, she may not be able to breathe once she makes her appearance into this world. I can only pray that there is enough fluid in there to keep her lungs growing.
I have been doing research and reading as much info as I can to better prepare myself for what is to come. What I have read in more than several books is having a well grown girl, from a single pregnancy, who’s mother received steroids, is the equivalent of adding a week to the baby’s growth. That’s us!!!! This really only makes a difference if she is born in the next 2 weeks, but still makes me feel good that we are 4 for 4. Although all babies are different here are the stats for the next few weeks if she is born:
24 Week – 50% Survival, 50% minor to severe disability
25 Weeks – 75% Survival, >30% minor to severe disability
28 Weeks – 95% Survival, 12% chance of severe disability
As you can see the next month is so critical in her survival and development. I try not to think about these facts, but I would rather know what we are up against then be surprised.
Continue to send your thoughts and prayers. I think it is working 😉
Day 10: Wednesday, February 16, 2011
(Insert Aretha Franklin Singing)
Oh freedom (freedom), freedom (freedom), freedom, yeah freedom Freedom (freedom), freedom (freedom), freedom, ooh freedom
I made it outside today. It was amazing! I ordered a coffee from the coffee shop and sat outside with papa and mom. I almost felt normal. My mom felt Mattie kick me for the first time. That was exciting. Jim felt her a few days ago, for the first time too!
No changes today, just thankful for another day of growth for Mattie. Jim and I have date night tomorrow. He is bring a greasy pizza and we are going to watch the season start of Survivor, our favorite show.
WARNING: The following is a tear jerker, read at your own risk
My little girl
Still in my belly, still so small
It is not time to come, not time at all
Strong little heart, Sweet little face
My little girl who makes my heart race
I’m trying to be strong for me and for you
Trying to hold it together cause that’s what Momma’s do
We’ve put your life in God’s hands
Holding on the best we can
Day 11: Thursday, February 17, 2011
“I am still determined to be cheerful and happy, in whatever situation I may be; for I have also learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances.”
Jim started reading the preemie book last night and he started to realize the full magnitude of our situation. Even though the statistics look bad right now, we have to keep a positive outlook. Not knowing what problems Mattie will have once she is born is scary and it is hard to think about and even grasp. I think that it takes a special person full of compassion and love to be able to handle the possibility of having a disabled child. Maybe we were chosen for this, because God knows we can do it. Jim says to me last night “No matter what, I can’t wait to be the father of this child”.
I can’t wait either.
Another day down 🙂 Thank you to everyone who has left a message for us. I love reading and re-reading them. We love all of you and cant thank you enough for everything.
Day 12: Friday, February 18, 2011
One of my favorite doctors came by this afternoon and had some good things to say. When I make it to Week 34, Mattingly will be delivered no matter what. So it looks like she will hopefully have a late April birthday. April 24th is the exact date. This just happens to be my nephew Jack’s birthday and our good friend Mike’s birthday 🙂 I am not sure if they schedule c-sections for Sundays, so I will have to ask. I asked the doctor about Mattie’s lungs and she said that if the high risk dr has me here, then it is a good sign that they think she had enough fluid in the beginning that her lungs developed. No way to know for sure, but it was a positive outlook and that is what we needed to hear.
I also got permission from my doctor to have wheelchair privileges for 4 hours for a… Birthday Party for Joba!!!! As long as the hospital allows, it will be in a meeting/training room. The hospital does this for baby showers for “long timers”, so my head nurse is asking if it is ok for his birthday. I will keep you posted 🙂 Most of you know that I LOVE to throw parties and was so disappointed when we had to cancel the park for Joba’s 2nd birthday party. Crossing my fingers that we can do this and I can have something to plan and look forward to. (I am sure Jim is rolling his eyes at this!)
Mattie is doing well and I am hanging in there. Jim brought my scale from home so I could weigh myself. I feel like my stomach is soooo much bigger. The scale says 3 pounds in 2 weeks! I will take it! Date night last night was fantastic 🙂 I think I am going to LOVE this season of Survivor!
Jen requested more pics so I added some to gallery.
Jim and Joba “hiding” in the closet
My favorite part of the board is the bottom
Day 13: Saturday, February 19, 2011
Another day passed. I am starting to get antsy in here. I am not bored, but just missing my home, my husband, my child, my kitties, my bed, my life. I am pretty much over it. Starting to get nervous about Week 25 ultrasound on Monday… Mattie is doing well. I am feeling her more and more every day. Her heart is still doing great. My 26 week ultrasound will be a big one with measurements and weight done on her to make sure she is still growing.
Here is a pic of Joba from earlier today 🙂
Day 14: Sunday, February 20, 2011
Happy 25 Weeks Mattingly!!!!
I had a nice day today. Rox and Jamie brought me a home cooked meal that was FANTASTIC! Jim and Joba came by around 4 and we hung out in my room and when he started to get antsy we went on my 30 break into the outside world. That broke up the day. They ended up staying for almost 3 hours!!!
The nurse I had today explained to me that her heart was doing a 15×15 which is apparently good. Normally they don’t see that until the baby is 32 weeks. I am not 100% how to explain what a 15×15 is (I think it is when her heart can accelerate up to 15 beats higher than her baseline), so it looks like she is already excelling 🙂 That’s my girl!!
Joba has been telling Jim and Nani when he has poop in his diaper. I had my mom go out and buy him a toilet to start practicing on. He LOVES this thing. He demands to go into the bathroom to “poop” and proceeds to sit on the toilet. He then makes whoever is with him, sit on the big toilet. Too cute. Here is a pic my mom texted me from today:
Day 15: Monday, February 21, 2011
Ultrasound Monday… they have me waiting forever and ever. It is 5:30pm and I still have not been called down 😦 This sucks!!! As long as it does not happen in the next 30 minutes, Jim will be able to be here for it.
Spent the day working on projects. My mom came by and took me to get a coffee and some fresh air. We found out that they will let us have Joba’s birthday party in a training room! I am excited for that! I am going to do an Elmo themed birthday since he is obsessed with Elmo these days. Unfortunately we cant invite the 50+ people who came out for his 1st birthday, but I will make it up to him and everyone next year with a spectacular 3rd birthday bash. I may even get a pony 😉 (that was for you Jim).
I will update after the ultrasound…
Week 25 Milestone
Yea! Another week has gone by without anything going wrong. I am still leaking, but drinking anywhere from 1-2 gallons of water a day. I am hoping that I am replacing at least what I am leaking out. Apparently she is the size of an eggplant right now.
It looks like your positive thoughts, your prayers, bed rest, and 2 gallons of water a day are working!! Just got back from my ultrasound (they took me at 9:30pm) and my fluid is at a 6, yes a 6!!! Woohoo. We have not seen any increase in numbers so far, so this is fantastic news. Last week it was a 1.9. I am so shocked!! She still looks squished in there, but I could see 4 pockets this time instead of just 1. Three of the pockets were small but the biggest one looked good. She is not breech or sideways, but sorta at a slant. Her arms and legs are still by her head, so it is like she is folded in half, just like Joba. A 6 is still low but so much better than a 1.9 or what I was expecting to be even less this week.
We truly have an amazing group of friends and family. It makes me smile just thinking of everyone who has come together for our baby girl. We just might be ok. This news has renewed by strength.
Thank You Thank You Thank You!!!!
Mattingly 10pm February 21, 2011
Day 16: Tuesday, February 22, 2011
Tapping my heals and repeating “There’s no place like home”…
It is not working 😉
Missing Roo tonight, it has been 2 days since he has been here. I cant wait to get him here tomorrow and give him a million kisses!!
Not much went on today.
We are on the list to take a tour of the NICU this week. I am a little scared to go there and see the babies, but I think it will be helpful to see what it is like.
Mindy is being induced on Friday!! That is giving me something to look forward to. I cant wait to see what Parker looks like. I am excited that Mattie will have a cousin so close in age that is also a girl. Since Mattie wont have a sister, I hope that her and Parker will grow up and be as close as sisters 🙂
Day 17: Wednesday, February 23, 2011
Another uneventful day, but that is ok. Jim and Roo came up for awhile tonight. It was good to see him. Spending my days working on projects. It makes the time go by fast. I had 2 beautiful flower arrangements delivered today. My room needed them as all the original flowers I received were on their last leg.
I am still hanging in there. It is getting tougher being here each day. I cant even think about being here for 9 more weeks. It is hard enough to get through each day. I have had a ton of visitors. People are here every day. There has not been a day yet that I have not had a visitor. Thank you everyone who has stopped by!! It is nice to catch up and forget about the situation at hand.
Day 18: Thursday, February 24, 2011
No date night tonight as my mom had to go to Sarasota to watch Mindy’s kids while Mindy is in the hospital. Joba was extra cute tonight. He loves to give Mattie kisses and hugs. For the first time tonight he pointed to a picture of himself and said Joba and then pointed to himself. Too cute!!! I love when he says his name. Jim is having his 2nd birthday pics done tomorrow. I cant wait to see them.
Mindy called is on the way to the hospital with massive contractions… Stay Tuned!
Parker Bennett is here!!!!! She is beautiful and her and Mindy are doing well. I was on the phone with Mindy at 9:15pm and they were on the way to hospital. Mindy had her at 10:17pm, naturally. Talk about a close call!! I cant wait to meet Parker and hold her!!! So sweet!!!
In other hospital news… Mattie is still doing good. I am doing ok. Glad it is the weekend and I can spend time with Jim and Roo!!!
(hehe – I just noticed I said it is the weekend and it is only Thursday, Jim having Fridays off is rubbing off on me:)
Day 19: Friday, February 25, 2011
Today we went and toured the NICU. I was surprised by how many babies were in there… 46!! This hospital is a transfer hospital since there are only 3 hospitals in the area with a level 3 NICU, so that is why there are so many. It was hectic in there. Lots of nurses, doctors, babies, machines… The nurse explained that no matter what, Mattie was going to be taken there since she would be born under 35 weeks. There is no privacy between the babies. I can’t imagine if all the parents were there at once, how everyone would fit.
Jim and I had date night thanks to Mo and Jane 🙂
We did takeout Macaroni Grill and caught up on a few of our shows. Jim gave me the pics we had done of Joba, they came out super cute!!! Jim did a great job. He did also state that he was never going to do that again by himself!!
Here is a sneak peak of one of the pictures of Joba and then a cutie pie one of my new niece Parker May
Day 20: Saturday, February 26, 2011
No news is good news. Sorry I am slacking on posting. I write everyday, I just forgot to post yesterdays…
I had a lazy day today, which was nice. Dave and Joanna came by this afternoon and hung out for a few hours. Jim and Joba were up here for 3 ½ hours!! Yea!!! We went on my daily fresh air wheel, watched Elmo, and ate hamburgers for dinner! Meg came by this evening and stayed late which was nice because I always feel so lonely when Jim and Joba leave.
I cant seem to go to bed before midnight here… At home I would NEVER stay up this late. They do vitals on me at midnight, so the few times I was asleep, it was a pain in the butt to get back to sleep after they woke me up. So now I just stay up for it. They do vitals at 4am too, but I go right to sleep after that one 🙂 Ahhh the hospital life.
Nothing too exciting going on. I cant believe that it has been 3 weeks since I have been living here. I have come to realization that I am going to be here for the long haul. 8 more weeks… Bring it on!!!
Time: 12:20am – Happy 26 Weeks Mattingly!!!
Day 21: Sunday, February 27, 2011
Another uneventful day, but that is ok. Hung out with family and friends for awhile today. Jim and Roo came up around 3:30 and spent the rest of the day with me. I love the weekends since that is when I get to see Joba the most. I am getting nervous about the ultrasound tomorrow. This is the BIG one! Growth, fluid, and weight will be measured. I have been leaking more than normal this week, so I am even more nervous about that. Jim is taking the day off tomorrow since we never know when they will call us down for the ultrasound. I am looking forward to seeing him all day tomorrow.
I will update as soon as we are back in my room!
Day 22: Monday, February 28, 2011 and Week 26 Update
Just got back from the ultrasound. Mattingly’s growth was great. Right where it should be for 26 weeks. Her weight is 2 pounds 1 ounce. Perfect again. Fluid… not so much. Back down to a 3.1 this week. Overall we are very happy with growth. That was our main concern. The fluid is going to fluctuate according to our doctors. This week the fluid should be at a 17 😦 Her heart is still going strong and we got another cute profile pic of her. It looks like she might be ready to suck her thumb!
For some reason this crazy hospital thinks Sunday night at midnight is the proper time to weigh someone. This is the 3rd week that it has happened. I told the girl last night that weighing in at midnight is not good for the soul and it would be much better at 8am… I don’t think she cared! I am seriously going to talk to the head nurse about this 🙂
Jim and I had a nice day together. It was the most amount of time we have spent together in the last 3 weeks. I miss him soooooo much! He brought Dunkin Doughnuts and a big container of DD coffee for all the nurses today. When he was bringing me back up to my room after my 30 minutes of freedom, one of the nurses thanked him and he replied “thank you for taking care of my wife and baby girl”. So Sweet!!
After the beautiful outfit Mindy had Parker in, I decided that Mattie needed a similar outfit too… The brand is Zutano Itzy-Bitzy, pricey, but adorable!! This is what I just picked out for Mattie and ordered last night.
Thank you everyone for continuing to have positive thoughts and prayers for Mattie. It really means so much to us that we continue to have all this love and support. You all are amazing and one day I will repay you!!
Day 23-24: Tuesday/Wednesday, March 1-2, 2011
Not much has been going on… Days have been boring. Mindy is bringing Parker up so I can meet her. I am really excited about that. Joba’s birthday is Friday!! I can’t believe that my little boy is going to be 2! Time has really flown the past 2 years. We bought him a really cute tricycle for his birthday. We are making it a tradition to take him to a spring training game every year for his birthday. Last year we saw Yanks vs. Phillies. This year Jim is taking him to Lakeland to catch Baltimore vs. Detroit. I think it will be cool to be able to see every spring training stadium in Florida. I am disappointed that I am not going 😦
I am hanging in there for the most part. I have a set routine so that helps. Jim says I am living the college life with staying up late and waking up late 🙂 I am up between 7:30am and 8am everyday!!! Mattie is doing great. Every monitoring has been perfect so far!
I started thinking the other day about when I would be able to go down to the NICU and see her after I delivered… so I asked a nurse what the typical time frame was for someone who is having a c-section and she said 14 HOURS!!! WHAT!!!! So not happy about this. In fact I cried when she said that. So… I asked my doctor what he thought and he said expect 14 and hopefully it will be sooner. Well, that is not going to fly with me! Not sure what to do about it, but I have 7 ½ weeks to ponder 😉
Until Tomorrow, J
Day 25: Thursday, March 3, 2011
One of my favorite doctors saw me today and gave me some good news and some disappointing news. For the disappointing news… I will not be able to go home and do bed rest. A few doctors had suggested that it may be a possibility but that went out the window today. Dr. R says that sometimes in situations like mine the umbilical cord can fall down the birthing canal and if that happens it is emergency c-section time and she would feel better knowing that I was here in case that did happen. I trust her opinion much more than some of my other doctors, so I am here in 311 for the long haul. For some better news… My c-section has been scheduled!! Mattie will be delivered on April 25, 2011 at 7am (34 weeks and 1 day). Dr. R will be doing the c-section and I could not be happier. She was supposed to deliver Joba but since he decided to make an early appearance that never happened.
I finally met Parker today. She is sooooo cute and soooo tiny. I forgot how small newborns are. I cant remember Joba ever being that tiny!! It was nice to see my sister, we have not seen each other since Christmas and that never happens!! This is the longest we have ever went without seeing each other in a LONG time (miss you tons Mindy)
Jim and I had date night tonight. We caught up on Survivor and ate Cheesecake Factory. Yum! Jim wrapped all Joba’s presents up here tonight while I was being monitored. We had a lot of stuff delivered today so it was fun opening everything I ordered. I love online shopping 🙂 Can be slightly addicting (like blackjack) when you are stuck in bed all day 😉
Day 26: Friday, March 4, 2011
Happy Birthday Joba-Roo 🙂 Today had not gone as planned. Jim brought Joba here this morning so I could see him and he could open his gifts. He had a really bad cough and runny nose that progressively kept getting worse as the day went on. So right after opening his presents, he laid down next to me and started to fall asleep. He is sooooo sick. I just snuggled to him and held him, rubbing his hair and giving him kisses. My mom came to take him back to my house so Jim and Todd could still go to the baseball game. Once home, he took a nap but was very lethargic when he woke up and ending up puking all over the couch! Now he is back to sleep after a bath and some rocking in the rocking chair.
My first instinct when my mom told me he threw up was to tell my grandparents to get the car, I need to get home to home. This SUCKS!!! I feel like he needs me and I can’t be there for him, especially on his birthday. I only got to see him for 1 ½ hours today. It is days like this that really upset me.
Tonight is the rehearsal dinner for our good friends Graig and Marie. I should be there as I was a bridesmaid!!! Jim will be there, Joba at home with Grandma Mo, and me and mattie all by our lonesome 😦 Yes… I am having a pity party for a few minutes.
Dr. B is back and saw me today! She has been out on leave since this has all started. She basically reminded me that it is a miracle that I have not gone into labor and that Mattie is doing so well. I physically feel perfect and knowing that Mattie is doing great, I tend to “forget” why I am here in the first place. I know this is where I need to be for her sake.
So… Mattie and I are going to have a girls night tonight. She told me she wants chocolate cake for dinner since it is her brother’s birthday and she also thinks I should do some more online shopping for her. What Mattie wants, she will get!!
Here are a few pics from today with Joba and what I plan on buying tonight for her room:
Day 27: Saturday, March 5, 2011
Last night was a horrible night! Mo was watching Joba and she felt like he was having trouble breathing. She called Jim and he called Joba’s doctor. Jim had to leave the rehearsal dinner and take Joba to the emergency pediatric walk in clinic. At this point I am feeling so helpless. I am so worried and Jim’s phone is dead… They call me around 9:00 and tell me they are almost there. I waited and worried and worried and waited. Finally I call Mo’s phone at 11pm and they updated me… Joba’s oxygen level was at a 95% (should be 100) and they were doing several breathing treatments to see if it would increase. An hour later they were heading back home. The doctor confirmed he had the flu! They were able to get his oxygen level back up to a 98% and sent Jim home with 4 prescriptions and a breathing treatment machine. I thought it was bronchitis since he did not have a fever. Little did I know that you can have the flu without a fever.
Joba was feeling and breathing much better and he went to bed around 1 am. I can not even explain the feeling of knowing my son is so sick and not breathing well and I cant even be there to comfort him. I don’t wish that upon anyone!! It is awful.
Joba is doing much better today. He has to do breathing treatments every 4 hours and take a steroid medicine and a flu medicine. Joba never got his flu shot this year. I don’t like this shot. I am not sure if I will change my mind since this has happened or not.
My doctors are concerned with me catching the flu now since Joba was here yesterday. He is not allowed to come to the hospital for 4 days! Apparently it is very bad if a pregnant woman gets the flu and they said in my situation it is worse since there is a greater risk of an infection since my body would be fighting off a flu and not an infection…. Damn, it is always something!!! My heart hurts knowing I cant see him for so long 😦
Poor Jim… He is stressed to the max. I can only hope that he is having a good time tonight at the wedding.
So… not only does Mattie need prayers for good health, so does Joba! I have not had time to even think about the fact tomorrow is week 27!!! Mattie’s odds are increasing and she is still doing great. Finally something to make me smile!!
I have been here 2 days shy of 1 month. I am starting to wonder if I am going crazy yet…
Day 28: Sunday, March 6, 2011
Not having the best day of my life. Very emotional today. Missing Joba and Jim. Leaking a lot…
“Everything’s different, just like that. Take me back to just before I got dizzy. It’s amazing what a minute can do.”
Day 29: Monday, March 7, 2011 and Week 27 Update
A new day!
Early ultrasound today and received some really good news… My fluid is back up to a 6.6! I am very excited about this. I have been so worried since I have been leaking more than usual this week. Positive thoughts and prayers continue to work miracles 🙂
My wheelchair privileges have been moved from 30 minutes to 1 hour… The question now is how many innings can I get in at a Yankee spring training game in an hour? A 10 minute wheelchair ride away… hmmm I am thinking at least 2 🙂
Joba is feeling and doing much better. Jim took him to see his normal doctor today. His oxygen is back to 100% and he can stop the breathing treatments and just do them as needed. I am able to see him tomorrow!!! I have been missing him more then I thought was humanly possible.
Mindy has finally talked me into having a baby shower. April 9th is the date we are shooting for. Just waiting on hospital approval.
“See, you and me have a better time than most can dream of, better than the best. So we can pull on through, whatever tears at us, whatever holds us down, and if nothing can be done we’ll make the best of what’s around.”
Day 29: Monday, March 7, 2011 Facebook Update
Today marks the 4th week of being in the hospital. I am 27 weeks and Mattingly is still going strong. I have not lost my mind yet 🙂 Delivery scheduled for April 25th. Only 7 more weeks to go. Thank you for all your positive thoughts and prayers. They are working. Miracles really do happen.
Day 30: Tuesday, March 8, 2011
I got some bad news this morning… I did not pass my blood sugar test for gestational diabetes 😦 I have to take another test tomorrow that involves more needles and will last 3 hours. We can’t believe that this is happening.
If I do have this type of diabetes, it will go away after I deliver, but I will be on a strict diet of no sugar and have to prick myself 3 times a day!!! I hate needles and blood. I get really clammy every time I have to give blood or anything that involves needles!!
Wish me luck that I pass this test tomorrow am.
On the brighter side of things… I saw Joba today for the first time since Friday. It was soooooooooooooooooooo good to see him and kiss him and love on him. It was a good afternoon. Jim is bringing him by again tomorrow after work. When he was leaving today Jim said, give momma a kiss. I figured he was going to blow me one, but no, he came up to me and kissed me smack on the lips!! It was too cute and made my heart melt a little. I needed that 🙂
Jim texted me this pic over the weekend:
Too Cool For School!
Day 31: Wednesday, March 9, 2011
I passed the 3 hour test!!! Yes!!! I celebrated with Chipotle and a Coke. Yum!! It was a rough one this morning as the lab people came in at 4am (as though this is a perfectly acceptable time to start this test) and took blood. They came back at 5:15am and made me drink a ton of really sweet stuff. Then back at 6:15am for more blood, and 7:15 for more blood, and yes… 8:15am for more blood. I was exhausted after all this and told the nurse I was going back to sleep for a few hours. This hospital is crazy with the 4am blood work and midnight weigh ins.
I have had a few rough heart monitorings with Mattie the past few days. I have had to stay on for an hour rather than 30 minutes lately. The nurses and doctors are not too considered, but it still worries me.
Roo and Jim came by after work. They are both doing well. Joba loves to tell Jim to hide in the closet with him. It is so cute. I am going to have to catch it on video and get it uploaded. Tomorrow is date night with Jim. Cant wait!!
Day 32 & 33: Thursday and Friday, March 10-11, 2011
I was upset yesterday when one of my doctors told me that I only borderline passed the test and that I should still go on the diabetic diet anyway. He left me confused since he said I could still have outside food. A different doctor came in today and said there was no reason for me to be on the diet. I only failed one of the four blood tests and it was not by much. She wants to retest me in a few weeks to be on the safe side. The diet was ridiculous… 2200 calories between breakfast, lunch, dinner, and 3 snacks! I never eat that much food. I barely finished my breakfast today when they brought me my 9am snack… yes, 9am snack! These people are crazy!! They called me at 6:30am for my breakfast order… my response “some more sleep” 🙂 They let me slide by until 8am, but I was already up at that point! Glad that chapter is over with… for a few more weeks anyway.
Date night was nice. We had Outback for dinner and watched Survivor. I am so glad to see Russell officially gone. I have always been a big fan of Rob (even though I want to puke every time I see his Boston hat). I am looking forward to March Madness and the brackets. It will give me something to watch every day.
Joba was extra cute today! He walks in and says “grilled cheese and french fries”. I guess he is used to eating that when he is here 🙂
Tomorrow is his party. I can’t wait to be able to be out of this room for more than an hour!! I will post lots of pics!
I was on the monitor for over an hour tonight. Three big dips in Mattie’s heart rate. I am worried that I have very low fluid this week since she seems to be pressing down on her cord more than ever. My doctor was called, but not much they can do. She eventually moved off of it and went back to normal. I switched positions and that helped. The nurse said it probably happens more than I think and that is the way it is with low fluid 😦
Saying extra prayers tonight for Mattie and all those affected by the earthquake / tsunami.
Day 34 & 35: Saturday and Sunday, March 12-13, 2011
Joba had a good time as his party. He had a grand time running around with all the other kids. It was nice for me to be able to get out of this room for 4 ½ hours. I was wheelchair bound, but that was fine. This was the longest period that I had seen Joba… almost 6 hours!!
Today (Sunday) is the 28 week mark!! This was the original goal we set our minds to when I first got here. Mattie’s chances of survival increased to 95% today. This news makes me smile. Only 6 more weeks left!!
Here are a few pics from the party:
Day 36: Monday, March 14, 2011 and Week 28 Update
Jim was able to go to the ultrasound with me today since it did not take place until 7:10pm. Just before we got called down, I had a big gush of fluid leak out. Not sure why this happened since I was sitting up, all I felt was a nice kick from Mattie and bam… The ultrasound was good. Fluid is at a 5.7. Lower than last week but not by much. I wonder how much would have been in there if I did not have that big leak just before we went in. Mattie is still breach with her legs and arms by her head. Everything else they checked today was perfect. Next Monday is the growth ultrasound.
My monitoring did not go so well tonight. Mattie had a few big dips in her heart rate so they called my doctors. (The dr on call is new to the practice and today was the first day I met her. I was disappointed that she did not spend more time with me going over everything.) The D said that I needed to stay on for another hour and see how she does. Meanwhile my nurse put a straw in my pitcher and told me to drink as much as I could. Mattie only had one dip the last hour of monitoring and finished out strong. During this time I started to feel some pressure. So when the D called to check up on me, she put me on strict bed rest for the rest of the night and I am to be evaluated tomorrow by the D on call!!! ARE YOU KIDDING ME???? This D does not even know me or my case. I can’t get up at all from bed… yes that means I have to use a bedpan. What started to be a great day with celebrating 28 weeks and a good ultrasound just went down hill quickly. The nurse told me that the D was trying to be on the safe side with the big leak I had, low heart rate, and the pressure I felt… but I don’t get how this is going to help AT ALL!!! So my ? to the nurse was… if it is only for one night what time do I get taken off. She said for me to call at 7:30am and talk to the new D on call…
I am sooooo upset by this. If it was any of my other D, this would have never happened.
I keep trying to tell myself it is only for one night… but it still sucks and yes, I cried 😦
Day 37 & 38: Tuesday and Wednesday, March 15-16, 2011
I was taken off complete bed rest first thing in the am. As soon as the tech came in to do vitals at 7:30am I had her get my nurse and call my doctor. My blood pressure was the highest I had ever seen it. I was ready for a fight 🙂
I still got up in the middle of the night to use the bathroom… I was not about to use a bedpan!!!
Long day today. I have not been outside in a few days now and I am missing the fresh air. Jim is home with Joba tonight. Joba is not feeling well. He has some type of stomach bug. I miss them 😦
We have officially decided on a middle name for Mattie…
“Hope is not the closing of your eyes to the difficulty, the risk, or the failure. It is a trust that -if I fail now -I shall not fail forever; and if I am hurt, I shall be healed. It is a trust that life is good, love is powerful, and the future is full of promise”
Day 39: Thursday, March 17, 2011: The ½ Point
Happy St. Patrick’s Day!
The morning started out with a great monitoring session 🙂 Yea!!!!!!! I was thinking that today was going to be the first day that I did not have visitors… but I was wrong 🙂 Papa came by with some banana cream pie, then Tasha stopped by and we sat outside for an hour (check out the green socks Tasha brought me the other day… DMB green socks!!!)
Mandy came by with a basket full of goodies and a cute balloon in the shape of a beer… green of course.
Tracey, Chris, Marie, Graig, and Payton came by after work. Tracey and Chris brought me some beer!!! O’Doul’s 🙂 but it tasted FANTASTIC!!! I have not tasted beer in soooooo long. I watched a bunch of basketball today and as I write this I am 9 for 11 on picks!
I just got off the monitors… 1 ½ hours. Mattie had some really high beats and then some really low beats. They could not get a good steady reading on her. The doctor was called and she started to watch the beats from her computer… Mattie eventually steadied out, but it is so stressful! When I talked to the Doctor today, I told her my concerns about Mattie’s oxygen being cut off and not knowing it. The D explained that Mattie would correct herself, it is human nature. I asked at what point would they deliver her early if the heart rate kept having a lot of variables. So far Mattie is ok. They look for prolonged periods of accelerations and prolonged periods of decelerations. Mattie has neither. She corrects herself before they consider it to be “prolonged”. Tonight was the closest I felt that she came to a “prolonged” state. My hands have really broken out into my “stress rash” that I get. It is terrible. They are swollen, bumpy, and itchy 😦
Tomorrow we are meeting with a NICU doctor. I have built up a nice long list of questions to ask. I hope that they are more positive then when we first meet them at 23 weeks. I have heard some very positive preemie stories in the past few days. It always makes me smile.
If all goes well I would have lived here in 311 for 11 weeks, 78 days, or just shy of 3 months. I feel like I have been here forever. I cant believe that I still have another 39 more days to do… Since I have reached the ½ way mark, I am ready to start a countdown to the end.
We normally do a traditional Bob Flannery (Jim’s Grandpa) shot on St. Patty’s Day. So here it is… Here is to Bob Flannery, a time flying 39 days, a healthy baby girl, and somewhat sane mother in the end… Cheers!
PS – Joba is feeling much better. He had a rough morning but has bounced back to almost 100%, Mo – Systolic was 136!!!! I am normally around 106.
Day 40 & 41: Friday and Saturday, March 18-19, 2011
Today was a nice day. Jim came over here for awhile in the am. We had lunch together and waiting for the NICU D to come talk to us. As usual, that did not happen so he left to get Roo from daycare and we hung out the rest of the afternoon and evening together. The NICU D came in around 7pm but then had to leave and came back at 10pm. We did not get any positive information from her. I know that is her job, but it still is hard to take. We know the problems and risks we are facing, but since Mattie has done so well, I have been more positive about everything almost thinking that things just might be ok. It was a reminder to keep praying. The day she is born is going to be the most stressful day of my life. I am trying to mental prepare for it.
Jim and Joba were here early today. Jim brought me Starbucks 🙂 Yum!!! I drafted one of my baseball teams today and placed some bets on the basketball. Mattie has been doing well on the monitoring the past few days. I am happy about that.
I found this article online. It is the most comprehensive info that I have come across. This is medical reading… Just thought I would throw it out there if you were interested in reading it. All the info pertains to me, but the section “PPROM in 2nd Trimester” is more specific to what happened to me.
Day 42: Sunday, March 20, 2011
Hello 29 Weeks! 5 More Weeks Left!!!
Day 43: Monday, March 21, 2011 and Week 29 Update
The Growth and Weight ultrasound was done today. Mattingly is looking good! She weighs almost 3 pounds (2.15) and all her measurements are on target. My fluid is low this week. I am back down to a 2.5 😦
I have had more leaking during the day than usual. No one is sure why that is, but it has not concerned any of the doctors.
Jim’s big race in NYC would have been yesterday. I am sad for him that he missed it. I hope that once I am back home, he picks running back up again! Maybe next year we will both run it 🙂
I am not sure if I mentioned this but…. The official birth stone of April is a DIAMOND!!! Jim got me a really beautiful ring (Joba’s birth stone) after he was born, so I have been looking online to see if there is anything out there with Mattie’s birth stone 🙂
I found this ring and I love 😉
This is what Joba’s ring looks like:
Day 44: Tuesday, March 22, 2011
Last night was a tough night of sleep. The girl in the room next to me had her baby and the baby kept me awake all night crying!! I feel sorry for that mom! Joba was such a good baby, I think we were spoiled. If all this craziness is a sign of what is to come, we have our work cut out for us once Mattie is here 🙂
No Jim or Joba tonight. It was their “night off”. These are the worst nights! Jim did send me a cutie pie pic of Joba that I will share. Here are a few of Mattie from yesterday.
“Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops… at all.” ~Emily Dickinson
Day 45-47: Wednesday, Thursday, Friday, Saturday, March 23-26, 2011
The days just sort of melt together. Mattie has had some really good monitorings, the past few days. Last night we were on the monitor for 1 ½ hours and the Dr was called. Nothing too crazy some low dips, down to the 90’s.
Thursday night was date night. Jim brought be Bella’s!!! It was FANTASTIC. We watched survivor, bet on basketball and I had a few sips of wine. It almost felt like a “normal” night.
Joba skipped school on Friday and came to visit me early this morning. We took Joba outside with some bubbles. He LOVED it! Apparently I am not very good at blowing bubbles through the wand. Jim took over and was shocked at my inability to make bubbles. I guess I can add that to the list of failed classes in elementary school. Jim took Joba to the Phillies game yesterday afternoon to make up for missing the game on his birthday. I gave Jim the camera, hopefully he took some pictures.
VCU! VCU! VCU! My new favorite collage basketball team! I stayed up late and watched the game. I had $10 straight up on them – turned my $10 into $26! I have been betting them since the start of March Madness. I read an article that said they could go all the way… I just wish that I had bet more money on them early on instead of my stupid $1 bets 🙂 I told Jim last night that I wanted a t-shirt! Jim and I am drafting out shared daily baseball league tomorrow. I am excited for baseball to start. It is my favorite sport. I am really going to miss not being able to watch the Yankees everyday 😦
(In case you have not noticed I am a sports junkie)!
March 26th…. It almost seems surreal that I am going to have a baby in a month! I am starting to get scared. It is already scary having surgery/baby, but I am going to be a mess that day wondering if she is going to be ok… As much as I try to be positive, there is a part of me that is protecting myself emotionally in case things dont go well. I dont know if that is human nature or just me…
“Hope is faith holding out its hand in the dark” ~ George Iles
Day 48: Sunday, March 27, 2011
Happy 30 Weeks Mattingly!!
A little inside information on who Mattie is named after:
Don Mattingly, nicknamed “Donnie Baseball”, played his entire 14-year baseball career for the New York Yankees (1982–1995). He played 1st base. After his playing career, he also served as a hitting coach for the Yankees and Dodgers prior to taking on his current position as manager of the Dodgers. He is commonly cited as the best Yankee player to have never played in a World Series. His career had bad timing, as the Yankees lost the World Series the year before he broke into the big leagues and they ended up winning the World Series in the first year of Mattingly’s retirement. The Yankees retired Mattingly’s number 23 and dedicated his plaque for Monument Park at Yankee Stadium in 1997. The plaque calls him “A humble man of grace and dignity, a captain who led by example, proud of the pinstripe tradition and dedicated to the pursuit of excellence, a Yankee forever.”
Don Mattingly is Jim’s favorite Yankee player. 23 is my favorite number.
Day 49: Monday, March 28, 2011 and Week 30 Update
7 weeks down, 4 more to go!! Fluid is at a 3.5 this week, up 1 from last week. It should be at 15. Everything looked good today. She is still breach with her feet and arms by her face. Our monitoring sessions have been good this past week. I am looking pretty prego at this point. I am going to have Jim do some belly pics in the next week. I did them when I was pregnant with Joba. I am trying to make sure that I do the same for her and I did for him.
We are holding off moving Joba into his new room until I get home. Jim is still planning on painting it in the next few weeks and getting it ready, but I want to be there for the “big move”. My nesting need has kicked in full force but I have nothing to “nest” 😦
Jim brought me all the stuff we had for Mattie so I could go through it and see what I needed. I did that in about 30 minutes! Next up is going through Joba’s storage bins to see what things I can pull out that she can wear and use. I don’t think Jim is going to be happy carting those bins up here!
Here is a few pics from the game Jim and Joba went to on Friday:
Day 50-51: Tuesday and Wednesday, March 29-30, 2011
Best $25 I have spent since being here… subscription MLB online to watch all the baseball games live for a month!! I was sad that I was going to miss a month of baseball and Yankees, but not anymore 🙂 Yankees play at 1pm tomorrow!! Woohoo!!!!
I could not be more excited!
I woke up sick today 😦 I have a really bad sore throat and runny nose and just feel miserable! No Jim or Joba today. We are trying to keep Joba well. Joba was just at the doctors yesterday and got on antibiotics for a cough he has had for awhile. We were trying to be proactive with him because if he is contagious, he can’t come here… Now I am sick… Yuck!!! I finally just took a cold pill in hopes of getting some sleep tonight. For the first time since I have been here I took a nap today for 2 hours. That is very unlike me since I normally cant sleep during the day. It has been 3 days since I have been outside, in part since it has been raining the past few days. I hope to get out tomorrow.
26 days left! The countdown has officially begun.
All it takes is one bloom of hope to make a spiritual garden. ~Terri Guillemets
Day 52-54: Thursday, Friday, Saturday, March 31-April 2, 2011
No outside for me today. There was crazy weather here inTampa. I did not feel anything or see anything. I would have had no idea if my nurse did not tell me there were winds over 100mph!!! I am still feeling sick 😦
Jim braved the storm and came over for date night. We watched Survivor and ate Outback again!! Only 3 more date nights left in the hospital. I told him we needed to make them good (ie – eat good food) 🙂
I was really missing Roo today. It has been 2 days since I have seen him. He had tumbling class at school today. I would love to see what that entails with a bunch of 2 years old!! Jim and Joba showed up around 4pm and I FINALLY went outside! It was beautiful out! Tomorrow Jim and some of his friends are painting Joba’s new room! I can’t wait to see how it turns out. I ordered this cute monkey for the wall.
Sorry I am slacking with these posts. Not a lot going on here these days. I am felling much better. I sound worse than I am. Joanna is coming by to dye my hair today. I cant wait to not have any grey’s!!
I am looking forward to the basketball games tonight! GO VCU!!! (sorry Marie)!
I hung out with Jim and Roo this afternoon. Nana and Grandma came by and we had a nice hour outside playing with bubbles. Jim left early to meet the boys to paint, so it has been a quiet night for me. I played some blackjack online, watched some baseball, and just watched VCU lose 😦
Mattie’s monitoring sessions have been going well. Just another day in paradise 😉
Once you choose hope, anything’s possible. ~ Christopher Reeve
Day 55: Sunday, April 3, 2011
We wanted to let everyone know that Mattingly Hope was born at 5:50am this morning. I went into labor last night and the doctors were unsuccessful in stopping it. I delivered her via c-section. She is doing well. We heard her cry a few times and then a breathing tube had to be placed. I just went down and saw her for the first time. She is beautiful! The doctors are cautiously optimistic. The nurses think she is doing very well. We are still in shock!
I am doing well. Just extremely tired and sore. I will post more details after I have gotten some sleep.
3 pounds 14 ounces; 16 ½ inches
Facebook Update 4/4/11
Mattingly Hope was born at 5:50am yesterday morning. She is 3 pounds 14 ounces. We made it to 31 weeks which is a miracle in itself. She is doing amazing well for being born so early. She will be in the NICU for 4-8 weeks.
Thank you to everyone who has been supporting us and praying for us. God has blessed us with a beautiful baby girl!
Birth Story – Day 1-2 Sunday & Monday, April 3-4, 2011
Mattie is still going great today. I am still extremely tired and did not get much sleep last night between pumping, peeing, and nurses checking in on me. I have promised to post the whole story so here it goes:
I started getting contractions around 9:30pm Saturday night. I called Jim and told him and then let my nurse know. I was put on the monitors to confirm and my doctor was called. At 10:45 I was given terbutaline to stop the contractions. It worked for about 2 hours. At 1am I started to track the contractions again and they were coming every 4-5 minutes. I called my nurse and told her. She told me that since the medicine did not stop them, she thought it was labor. I called Jim and told him to come up here. I did not have a good feeling about this. Within 20 minutes they had a stretcher in my room ready to take me downstairs so I could be evaluated by labor and delivery nurses. I called Jim and he still had not left!!!! My worst fear was him not being in the OR with me! He managed to get there in 10 minutes with no speeding ticket. Graig was left in charge of Joba. The doctor finally came in and ran a few tests. I was not dilated. They started an IV of fluids in case I was dehydrated (even though I told them I drink a gallon of water a day!). We waited about 45 minutes to see if the fluids would help decrease the contractions. That did not work. The doctor wanted “proof” that this was not false labor and we agreed. I was not ready for Mattie to be born yet!! At this point I was having terrible contractions and could not even talk through them. They were coming on faster and longer. Finally the blood test results came in and my white blood cell count was very high. I had an infection. That was all my doctor needed. An emergency C-section was ordered STAT. They rest is a blur of needles, iv’s, contractions, medicines, antibiotics, more contractions, a spinal block, Jim in scrubs, and me lying on the OR table scared out of my mind. I think that all took about 15 minutes.
As I laid on the OR table, Jim and I kept our eyes locked. We were scared. I kept saying how I cant believe this is happening to us. We said a prayer. After what felt like forever, they told us Mattie was delivered. We did not hear her cry. I looked at Jim, my heart was broken. I wanted to scream at the doctors. What was going on? Why wasn’t anyone talking to us? We could see the Neo doctors working on her but no one said a word to us. Finally we heard a faint cry and then another. Jim and I started crying. That was the most fantastic sound I have ever heard in my life. It felt like forever before a neo doctor finally came over to us. Mattie was breathing but not good. They had to insert a breathing tube. Her apgar scores were 7 and 8. These were great scores! I was expecting a much lower score. They continued to work on Mattie. We could not see her or what they were doing. Jim said they all looked relaxed and not stressed. That made me feel a little better. Another doctor came over and said that they were taking her upstairs. They would update us within the next few hours. A nurse asked Jim if he wanted to see her. Jim left for a minute and when he came back he was crying. This made me cry. He said she looked so little. I continued to pray. I never got to see her. Jim was kicked out of the OR a few minutes later. I was finally taken to recovery where Jim met up with me again. We had the recovery nurse call up to the NICU to get an update. At this point it had been over 2 hours since she was born. We were told that she was stable and a doctor would be in touch soon. I finally could wiggle my toes and was taken back to what has been my home for the last 55 days… room 311.
It wasn’t until I got to see Mattie around 2pm that my fears subsided. She was so tiny. We could not hold her but could touch her through a little hole in her incubator. Her nurse spent a lot of time with us. She updated us on her progress throughout the day. After about 45 minutes we had to go back upstairs. I was exhausted.
I was still in shock and a nervous mess. Jim and I were both sleep deprived at this point. I could barely keep my eyes open. The rest of the day was a blur. I was having a hard time getting out of bed and was in a lot of pain. Jim and I went to go see her again around 11pm. The nurses had changed her position so I had a better view of her face. She is beautiful! She held my finger and I caressed her hair. It was an amazing feeling.
I am still extremely tired today. I feel like my brain is in a hazy state and cant seem to remember anything. I need sleep big time. I called the NICU at 4am for an update. Mattie was doing good. The doctor removed her breathing tube today!!!! We did not think this was going to happen so soon. Mattie has been breathing really good and has needed only a little bit of oxygen. After they removed the tube they put on something called a CPAP. [A nasal CPAP device consists of a large tube with tiny prongs that fit into the baby’s nose, which is hooked to a machine that provides oxygenated air into the air passages and lungs. The pressure from the CPAP machine helps keep a preemie’s lungs open so he or she can breathe. However, the machine does not provide breaths for the baby, so the baby breathes on his or her own]. This is a great step in her progress to breathing and getting oxygen on her own without the help of machines! Jim and I were there today when they did a heel prick for blood and we got to see a diaper change. The nurse had to hold her up and I was shocked at how small she was when she was held in someone’s hands. I am going to be so scared to hold her the first time. She is really tiny! Her weight today was 3 pounds, 11 ½ ounces.
When we went in to visit her tonight, she had the lights on her for jaundice. We knew this was going to happen as we were warned in advance that most preemies will end up with jaundice. We heard her cry several times today and it was a good sign that her lungs were strong enough to allow her to cry and a good sign that the breathing tube did not do too much damage to her vocal chords.
Her main neonatologist is very nice. He has been up to my room everyday giving us updates. This will continue via phone once I am out of here… my move out date is Wednesday. Bittersweet as I am really to get home, but sad to be leaving Mattie here. Her doctor warned us that she could be in NICU for 4-8 weeks. We will start praying for her to get better quickly so we can finally bring her home.
Mattie and her CPAP
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Day3 Tuesday, April 5, 2011
Thank you to everyone who posted messages. They always make me smile. Mattie is still doing well today. Her oxygen is down to a 26 (room air is 21). A few times today they took off her CPAP but her levels decreased when it was off. This just tells us that she is not ready to be independent of machines just yet. Her nurse today was really fantastic. Jim and I got to hold her for the first time. It was such a beautiful moment. I was able to lean down and kiss her. Her nurse let me change her diaper! We changed her blankets to one of hers. Her “bed” is looking nicer 🙂 The nurses told us to bring in some pictures and they will tape them to the sides of her bed so that is on my list of things to do. She is still under the lights for jaundice. We were told that her levels are lowering a bit but not enough to remove her from the lights. Her chest x-ray came back better today than the past few days. The doctor was happy about that. I am starting to finally produce a little bit of milk. Her doctor wants her to take in 5 ml every 6 hours. I was able to pump 4 ml out and it was given to her at 8pm tonight through her feeding tube. I am going to go down to the NICU at 2am to give them more milk and see how she is fed. It is a good sign that she is already taking in milk!!
Joba came by tonight and as he normally does, he wanted to kiss and hug Mattie in my belly. I tried to explain that Mattie was not in my belly anymore… he did not grasp that concept 😉 The NICU gave him a cute bear that one of the nurses made. It is made for siblings of kids in the NICU. I told him that Mattie gave him that bear and he needs to take good care of it. As he was leaving tonight, he had “Mattie’s bear” and his elmo movie in his arms 🙂 I cant not wait to be able to tuck him into bed tomorrow night!! It has been 59 days!!
I finished packing tonight. Tomorrow is the big day for me. I started saying goodbye to some of the nurses tonight. Everyone here has been amazing. I am taking home a ton of comment cards to personally fill out on everyone who has helped me through this experience. My time here is done. It is now all about Mattie. Good Night Room 311.
Day 4-5 Wednesday and Thursday, April 6-7, 2011
It has been an emotional rollercoaster the last few days. Mattie is doing very well. I am hanging in there.
I was released Tuesday am and was home around 11. Joba was outside waiting for me. It was a great welcome home! Walking through the doors it felt like nothing had changed, but in so many ways everything was different. I should be bringing my baby home, but instead all I have is another hospital bracelet. Every time I look at it, it is a reminder that yes, I am a new mother, but my baby is not with me. I am so thankful that I have Joba in my life. His hugs and kisses remind me that everything is going to be ok.
Jim and I got back to the hospital to see Mattie around 2pm after running a few errands and seeing Joba off to his nap. Her weight was down to 3 pounds 6oz. She was taken off antibiotics today which is great!! Her CPAP was dropped down to a level 4. Things are looking good. We could not stay long because the doctor decided to put in a PICC line and remove her umbilical catheter. A PICC line is a more permanent IV line. I called up to the NICU a few times through the night to get updates and she was stable and doing well.
We spent the rest of the day and night with Joba. I think I overdid it and had to lie down. I ended up falling asleep. The doctors told me it could take up to 6 weeks to be able to do activities that I was able to do before bed rest. I keep forgetting that I was laid up in a bed for 2 months. I do not have the strength or energy I used to have. Not even 10% of it. I am tired all the time and have emotional breakdowns half the time 🙂 Tucking Joba into bed made me cry. I missed that little boy so much. Just thinking about how much I missed him hurts my heart. All night he was all about his “momma”. In the middle of the night I reached over to Jim and held his hand. I am thankful to have my family back.
My own cup of coffee and shower makes for a terrific start of my day. I woke up early so I could be the one to get Joba from bed. It was like a normal day! I got to the hospital around noon. The doctors orders were not in yet. The nurse said there was a very sick baby and everyone was working on that baby. It made me extra thankful today that Mattie was doing so well. The orders came in at 1:15 and it was some great changes!!! Mattie was getting off the CPAP and will only have to use a nasal cannula. This is a small oxygen tube that goes in her nose!! No more mask over her face. We are finally going to be able to “see” her. Her jaundice levels went down again so the doctor decided to take her off the lights!! No more mask over her eyes! She gained 1 ounce and now weighs 3 pounds, 8 ounces. Her milk intake was also increased to 10ml a feeding. While we were waiting for the Respiratory Team to come in, Mattie’s nurse took the top off her bed and lowered the railing so I can get in close. I held her hand and talked to her for a long time. She had her eyes open and was looking right at me. I was crying (since that is all I do these days). It was a really special moment.
She did really good making the change to the cannula. I stayed until 3:00 just to be sure she was still doing good.
Jim is going to the hospital tonight when they reopen at 8pm. We can hold her now as long as she is still stable. When I say hold her, I mean hold her to our chest. We have only been allowed to pick her up.
I had to lay down again this evening. I overdid it again. I am so tired. I got up so I could rock Joba to bed. We read a book and then turned out the lights. I asked him if he wanted me to sing to him and he said yes. So I started singing a song that I have sung to him every night for the past year. It is a song from church called “Sing a New Song”. He actually started singing with me! He has never done this before. He remembered the song even though it has been 2 months since he has heard it. I was crying hard. That really made today perfect!
We have so many things to be thankful for. God has truly blessed us.
Mattie and Daddy holding hands – 2 days old
Me and Mattie – 1st time holding her – 2 days old
Mattie under the lights with her CPAP on and eye mask – Today before they were removed – 4 days old
Day 6-9 Friday, Saturday, Sunday, Monday, April 8-11, 2011
Mattie is doing amazingly well. Late Saturday night they took off the nasal cannula and she started breathing on her own!!! She has not had any periods of apnea. Her jaundice level had gone up a little but is coming back down. The doctor is talking about her moving into a crib soon. The PICC line should also be coming out in the next few days. Her feedings have increased. As of today she is eating almost an ounce every 3 hours. One of the nurses said she might be home by Mother’s Day. How fantastic would that be!!! Today I got to hold her close for almost an hour. It was so nice. It is getting harder and harder to leave her everyday. She is always on my mind.
Thanks to everyone who made it to her shower on Saturday or sent a gift. She is truly lucky to have you in her life and she is extremely spoiled.
We will be trying to finish up Joba’s room this week and hope to be painting her room this weekend. The house is a disaster, but slowly I am getting stuff put away and organized.
I am just about pain free from the surgery. I just have no energy and I am an emotional wreck a lot of the time. I think I am driving Jim crazy. I hope this passes soon. I cant stand being this way.
Jim went to the hospital tonight and just called with an update. Mattie is doing great! She is back up to her birth weight – 3 pounds 14 ounces. Jim got to change her diaper, weighed her, and gave her a bath! Lucky 😉
Here are some pics from this weekend and today.
1 week old and I can breathe on my own!
Daddy bundled me up for the night
Day 10 Tuesday, April 12, 2011
Mattie’s PICC line came out today. One more step in the right direction. She had another echo done today and her PDA closed. This is good news, but they are hearing a heart murmur. I played phone tag with the doctor today so I hope to get some answers tomorrow. The Dr. thought the murmur was due to the PDA not closing… so we shall see. Since the PICC line came out, she is now able to wear clothes. I was dressing her up today and accidentally pulled out her feeding tube! I had a mini freak out but the nurse reassured me that it was ok and they were going to move it through her nose anyway. I was able to do a photo shoot and got some cute pics with no tubes in the way.
It seems like Joba has gotten a bit needy the past few days. He was great the entire time I was at the hospital. I think he is having some anxiety now that I am home. He wants me to be near him all the time. It is cute! This morning he got in bed with me and held me. It was an amazing feeling.
Day 11-12 Wednesday & Thursday, April 13-14, 2011
I don’t have a lot to report. Mattie is still doing well. The doctor tried to see if she could regulate her temp by leaving her out in the open. She did not pass this test. The doctor says this is normal since she is still so young. Once she passes this test she can be moved to a crib instead of her “incubator”! The echo was done yesterday and her PDA closed but she still has a heart murmur. The doctor says this is common and 90% of the time it will go away by the time Mattie is 6 months old. We will have to take her to a cardiologist then to see if that is the case.
Tonight we moved Joba into his “big boy room”! I will have to post pics this weekend once we have it complete. We will be starting on Mattie’s room this weekend. I cant wait to put away all her things and get it organized 😉
I am feeling much better the past few days. I have been cleaning and “nesting” like crazy. It makes me feel better even though it makes me soooo tired. Joba did not go to daycare today since he was a bit sick. It was nice staying home with him. This was the most time we have spent together in over 2 months. He helped me we laundry, going through his old clothes, cooking, and moving his books into his new room. I am exhausted! I think he was too!
Here are some pics from the past 2 days!!
Day 13-16 Friday-Monday, April 15-18, 2011
On Friday Mattie was moved to a crib! We were so excited to see her make this step. This lasted for 2 days. On Sunday she was moved back to the incubator. She was not gaining any weight and her temperature was borderline low 😦 The nurses say 2 steps forward and 1 step back, but it was still somewhat discouraging to see her move back into the bubble. As of Saturday Mattie was allowed to start bottle and breastfeeding for one feeding a day! This was great news to me as I have been dying to nurse her. She did great with the first bottle she took so I was encouraged that breastfeeding would be a breeze. No so much… She has had problems since then taking from a bottle and she still cant master the suck for breastfeeding. I refuse to get discouraged on this. I know she is still young and most babies do not even have the ability to suck until they are 34 weeks. Mattie is only 33. I have been able to finally do skin to skin with her. I have cried both times. She is so little and fragile. It is the most amazing feeling having her pressed up to me skin to skin. I could sit like that for hours if they let me 🙂
She finally reached the 4 pound mark today! She was holding at 3 pounds, 15 ounces for the past few days.
Jim and I got Joba’s new room finished over the weekend. It turned out soooo cute! A big thank you to the boys who helped Jim with the painting!!! We picked up Mattie’s new furniture and got rid of a bunch of stuff. I finally feel like the house is getting back to “normal”! I hope to have Mattie’s room done within the next few weeks. We still have to paint the ceilings and walls. Any volunteers? 😉
Jim and I are both over the hospital. Every time I walk down the hallway to the elevators, I get annoyed. We are ready for her to come home. We are ready to put this experience behind us.
Here are some pics of the past few days:
Day 17-18 Tuesday and Wednesday, April 19-20, 2011
Last night Mattie was moved into a new “cluster” for more stable babies. I was not happy about this move because I was just getting used to the nurses in her cluster. The room is in the back area away from the craziness of the normal NICU. It is really quiet in there as most babies don’t have the monitors that constantly beep. For the first time ever I felt like I was abandoning her to a strange new place. I cried when I left. Jim and I can’t figure out why we don’t like this room, so we really can’t make a complaint. All her old nurses think it is a great move, a step in the right direction to going home. When we went on the NICU tour they said that this room was for babies getting ready to leave the NICU. Mattie got a new doctor today and we played phone tag twice. I never got a chance to speak with him and when Jim went at 8pm the doctor was in delivery. Jim feed her a bottle! Her weight today is 4 pounds 2 oz, up 2 oz from Monday.
I forgot to set my alarm tonight so I did not pump or have a chance to call her nurse to check on her. I call the NICU most nights around 3:30am when I am pumping. I called around 8am this morning and the nurse told me that the doctor changed her feed schedule to a bottle every other feeding. When the doctor called me today he told me that in the middle of the night he had the nurses put her back in a crib!!! No more bubble for Mattie!! Her temps all day today were great!! She is taking her bottles like a champ and finishing almost the entire bottle. Her weight today is 4 pounds 5 oz. Up 3 oz from Tuesday. I spoke we the doctor about how important it was for me to nurse her and he agreed and said that anytime I am with her in the NICU, I should try to nurse her no matter what. I went up there today and stayed for 2 feedings. She is still not really getting the hang of it so I had a lactation consultant come in at the 5pm feeding to work with us. She was encouraging and I felt better after meeting with her. We just can’t give up and must continue to practice as much as we can. The best news he gave us was that he thinks Mattie will be able to come home in a week!!!!!!!!!!!!!!!!!!!! How exciting is that!!!!!!!!!!!!!!!!!!!!!!!!!!! Her cluster today was a little better. I liked the nurses today and for a long time it was just me and the 2 nurses in the room. I was there for almost 5 hours today and noticed that the room is really quiet. I felt better about the move today especially since she might be coming home soon 😉
Day 19-22, 3 Weeks Old and 34 Weeks Old, Easter Weekend
“We have to find a way to make our minds right about this”. This is what Jim says to me as we are getting ready to go up to Chilies on Easter. Yes, Chilies on Easter. I forgot that Publix was going to be closed today so any idea of a nice Easter dinner with Jim and Joba was out the window. I have to somehow get it together. I say the words in my head again. Trying to get used to the idea…
I walked into church today with a heavy heart. The familiarity of the Catholic rituals makes me feel almost normal for the first 45 minutes of mass. We came back from communion and were kneeling down praying, I had to make my prayers fast in order not to lose it in church. I had no tissues. I knew God understood. I looked over at Jim and grabbed his hand. He looked at me and we both started crying. I kept telling myself be strong, have faith. We made it out of there without a huge breakdown, my heart still in pieces…
On my home from the hospital this afternoon, I blast some Dave and try and forget. I play the song that has become our theme the past few months, Steady As We Go.
Know troubles they may come and go,but good times they’re the gold.
So if the road gets rocky girl, Just steady as we go.
When the storm comes, you shelter me.
And I don’t say a word, and you know exactly what I mean.
In the darkest times, you shine on me.
You set me free and keep me steady as we go.
So if your heart rings dry my love, I will fill your cup.
And if your load gets heavy girl, I will lift you up.
Troubles they may come and go, but good times be the gold.
So if this road gets rocky girl, Just steady as we go.
I cry the entire way home.
Rewind to Friday. We have just been lead into the neonatologist’s office. It felt like high school when I was on the way to the principals office. There was trouble in our future. I told myself whatever was said, I would not cry. I would be brave and strong for Mattie and Jim. As Dr. W is talking to us, I glance over at Jim. He is looking straight at the doctor. I wanted to reach out and hold his hand but he was sitting too far away. I remember looking out the window and thinking to myself, this is not happening and then saying to myself, there is nothing good about this Good Friday. I force myself to refocus.
We have debated on what to tell people. Do we use the words I can’t seem say out loud? Do we sugar coat this? You have followed us for the last 3 months, prayed with us, supported us, it is only right to tell you what we know…
Mattie has PVL, a form of brain damage. The doctors believe that it happened while I was still carrying her. At some point there was loss of oxygen to her brain. She has several cysts on both sides of her brain. Cysts form where there is loss of brain tissue. There is a 75% chance she will have cerebral palsy and a chance that she will not have any issues. Nobody can predict what will happen at this point.
Mattie is currently thriving and if we would have never had this MRI, everyone would think she is a normal 34 week old baby. She is starting to eat well which is a very good sign that this is not a severe case. The doctor thinks she may be home by the end of the week. We are having a physical therapist do an evaluation on her tomorrow. We are also having another meeting with her neurologist this week. It could take years to fully understand and know how this is going to affect her. We have just entered a world of uncertainly with therapists, doctors, early intervention managers, and neurologists leading the way. Our life just dramatically changed. For the past several months we have put this in God’s hands. We have to have faith in him again. We have surpassed incredible odds to get where we are today. There is a reason why. God gave us this perfect little miracle. We will not let him down.
From Day 11, February 17, 2011:
“I am still determined to be cheerful and happy, in whatever situation I may be; for I have also learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances.”
Jim started reading the preemie book last night and he started to realize the full magnitude of our situation. Even though the statistics look bad right now, we have to keep a positive outlook. Not knowing what problems Mattie will have once she is born is scary and it is hard to think about and even grasp. I think that it takes a special person full of compassion and love to be able to handle the possibility of having a disabled child. Maybe we were chosen for this, because God knows we can do it. Jim says to me last night “No matter what, I can’t wait to be the father of this child”.
I can’t wait either.
Day 23-26, Monday – Thursday, April 25-28, 2011
After 79 days of having St. Joseph’s Woman’s Hospital in my life, we finally said goodbye on Tuesday. Mattie is home!
I got a call from her Neo Dr on Monday morning and he said “Can you room in with Mattie tonight? We are sending her home tomorrow”. We were shocked! I said yes and even joked that I could not believe they were going to make me spend another night in the hospital! I had nothing ready for her! I had to get her bed ready, find the car seat, do her laundry, wash bottles, and a million other things to get ready to bring a baby home. I finally made my way back to the hospital and into room 201 this time. We “roomed in” with Mattie to test her monitoring system that we were being sent home with and make sure we were comfortable with her feedings and care. Jim and I were alone with Mattie for the first time in our lives! It did not last too long since her home monitoring system was not working correctly and they had to take her back down to the NICU at 3:30am. Jim and I stayed until her 5:30am feeding and then went home for a few hours for some much needed sleep. We came back at 11:00am ready to take her home, but with hospital BS we were there forever. Jim and I left to go get a coffee and sit in the garden area one last time while the nurse was preparing her discharge papers. Finally at 5:15pm we were wheeled down to the car and I blew a kiss goodbye to the last 3 months of our lives!
The best moment was finally introducing Joba to his sister. He was so excited! He is not very gentle with her so we will have to keep on eye on him! Our first 2 nights were good. We are up every 3 hours with her. Most of the time we have to wake her up to feed. Mattie sleeps most of the day away. It has been nice just being close to her in the comfort of my bed! It is hard getting used to being up every 2 hours but this time I am going to try and nap a little during the day. I have mixed feelings about her home monitoring system. She wears a belt around her chest that monitors her heart rate and breathing. An alarm will sound if her heart rate increases above a certain rate or decreases below a certain rate. It will also alarm if she stops breathing for more than 20 seconds. It sucks having to carry it around with her everywhere she goes but at the same time, it gives me some peace of mind that I can walk out of the room for a minute and not worry that she is going to stop breathing!
This morning we had her neurologist appointment. We really did not find out anything additional about her PVL. It is a waiting game at this point. He checked her out and said she looked good! We have to bring her back in 3 months to see him and have another MRI done. This afternoon is her pediatrician appointment and I am still waiting on the early development program to call me back.
Jim and I are doing better. Since we got the news on Monday that Mattie was coming home, we have refocused our attention on her, getting her room ready, and just being a family again. To everyone that has called, sent messages and emails, we really appreciate it! Your support is overwhelming. Knowing that we have you all in our lives is an amazing feeling. Mattie is so loved! With you, our faith, and our love we will overcome!!
Feeding tube is out, last day in the NICU!
Days Are Running Together, Sunday, May 8, 2011 Mother’s Day
Mattie turned 5 weeks old today or 36 weeks. It is hard to believe that she should still be in my belly! The days are all running together. It was nice that Jim has been helping me with the night feedings on the weekends. I feel a little better today. Sorry I have not been posting. Too many things going on to sit down and write. I will try and back track to the past week. Mattingly is going fantastic. At her Dr appt. on Thursday she weighs a whopping 5 pounds 5 ounces! She almost can’t fit into the preemie clothes and the newborn size is a little big on her. She is taking around 2 ounces each feeding and is starting to get a third chin! It looks like she will be hooked up on the monitor for another 4 weeks. The monitor has been a major pain in the ass!! We are on our 4th one. This one is working much better. The one that we were sent home with was going off a million times! We asked her doctor on Thursday if I could exclusive start breast feeding and he said yes!!! Mattie is doing a great job nursing. We are still giving her bottles at night to make things easier. It takes awhile to get her to start nursing, but she is almost a pro at it. Mattie still sleeps all the time. She is only awake when we feed her and then goes right back to sleep. Joba is doing a little better with her. He likes to give her kisses and hugs. He enjoys shoving the paci in her face… he misses her mouth all the time and manages to get her eye!
This weekend was so nice. I spent a ton of quality time with Roo and Mattie. We made a ton of progress on her room and it is almost done!! Jim, as always, has been fantastic. I could not ask for a better husband and father!! We are taking it day by day. At the night of each night, as I say my prayers, I thank God for giving us 2 beautiful children!
6 weeks old and 37 weeks, Saturday, May 14, 2011
I pull into the house today after a night of no sleep and the tears start up. I know am about to enter an empty house. I final let myself break down. It has been a rough few days.
Mattie was admitted into the children’s hospital on Friday. Thursday night her apnea monitor went off a least 20 times. She was having pauses in her breathing. We were not sure if it was machine error or her so I brought her to bed with me and watched her chest rise and fall and then stop. Sometimes she would finally breathe on her own; sometimes we had to touch her to get her to start breathing again. I was worried. In the 3 weeks that we had been home, the apnea portion had never gone off. When Jim got back from dropping off Roo at daycare we called the doctor. We were told to call 911.
The paramedics looked her over and her vitals were fine. I knew something was not right so we decided to take her to the ER. We were told that she would be admitted. The ER doctor thought she had some type of respiratory infection such as RSV or bronchiolitis, both can mean very bad things in the life of a preemie.
Upon entering her hospital room I instantly got bad vibes. I could not even wrap my mind around living in the hospital again. The room was old and the staff was not friendly. I could honestly say that I wish we were back in the NICU and not the Children’s Hospital. I soon realized that we would have to be here 24/7 as I had no faith in the nurses on this floor. If something was going to happen to Mattie, I would have to be the one to get a nurse since they barely came into her room even with her monitors going off.
A chest x-ray was done, blood work, IV in leg, steroids given, breathing treatments started, nose swabs to test for viruses, and she was placed on oxygen. She is scheduled to see the Cardiologist, Pulmonologist (Lung Dr), and GI Doctor. We were ready get some answers, but as per hospital “rule” (insert sarcasm), it would have to wait until the am.
Mattie had a very light cough on Thursday. We even pointed it out to the pediatrician on our normal Thursday office visit and he did not think anything of it. Mattie cough has progressively gotten worse.
I stayed with Mattie last night. The beginning of the night started ok. Then around midnight her apnea monitor started going off. We had been fine all day. The nurse and I watched her for a while. She breathing was very rapid and then she would just stop breathing. This was the same thing that happened with us at home the night before. This continued on and off all night. I did not sleep. As soon as I would lay down and close my eyes the monitor would go off. I would jump out of bed and start touching her to get her to breathe. The nurses would bust into the room to see what had happened. I was physically and emotionally exhausted and so was Mattie. Jim took over at 11am this morning and I went home and slept for a few hours. Jim called me with the test results and doctor visit updates.
She tested negative for everything. She has a cold. I am thankful that it is not more serious, but the fact that we end up in the hospital because she has a cold made me come to some realizations. The Lung Dr might have said it best today… Mattie has underdeveloped lungs and an underdeveloped immune system. When she is sick, this is where she will end up.
Her cough and congestions is giving her these apnea spells. We were told that she will be released when she is better and when she stops having apnea episodes. The pedi who saw her today took more blood to rule out any chance of a bacterial infection. We are waiting on the results of that. Since 5am she has not had any episodes of apnea. I am ready to bring her home. I feel like the hospital cant do anything more then what I could do from home…
It is 11pm and the house is empty. It is just me and the cats. Jim is with Mattie and Joba is in Sarasota with his cousins. I am tired and numb. I have always said that God will not give you more than you can handle. We have been tested and tested the past 5 months. With my faith stronger than ever, I pray tonight for health and strength for my little family. I have a long few days ahead of me.
6 weeks old and 1 day, Monday, May 16, 2011
I woke up Sunday with only one thought on my mind; I was going to bring Mattie home today no matter what it took. (Thanks for the idea of home health care Karen, I was ready to suggest that if needed) Jim said she had a good night, only one scare on the apnea monitor. The blood results came back good. There was no reason for her to be there any more. The thought of spending any more time there made me sick to my stomach. We have a nebulizer so breathing treatments could be done from my house. She had not needed oxygen for almost 24 hours. She still has a bad cough that shakes her entire body, her eyes are crusty from the virus, and she is congested but still looking beautiful! The pulmonary doctor cam in at 12:30 and after a 15 minute discussion, we were going to be discharged at 3pm!!!! He was surprised that we were ready to go home and even said “I thought you would be scared to take her home”. I looked at him as though he was crazy and said “home is where we need to be. We have had enough of hospitals”. We were discharged with prescriptions for xantac, caffeine, steroids, eye antibiotics, and meds for the breathing machine. I am not a fan of any medicine and it sucks having to put all this in her body. I went over with him the issues with Mattie’s lungs and asked if he thought the damage was mild or severe. He told me moderate and wants to start seeing her on a monthly basis! Another doctor to add to the list! It is starting to get ridiculous. I just had to make a cheat sheet with all of her doctors and their phone #’s to keep it all straight!
Since we have been home, Mattie has done well. She is still eating great and she is getting her color back. We have an appointment with her normal pediatrician tomorrow afternoon and her eye doctor appt for a follow up from the NICU is tomorrow morning. I spent the morning making more doctor appointments and trying to pin down a date for her Baptism.
During this hospital stay the doctor ordered an EKG to check her heart. He was still hearing a heart murmur. We did not get those results yet. Last Thursday Mattie’s weight was 5 pounds 13 ounces. The hospital weighed her at 5 pounds 15 ounces!
She is my little fighter!!!
When did our life become so dramatic? This is seriously getting ridiculous. Here I am sitting on our couch having a glass of wine and trying to watch some mindless tv and I have to laugh. I would tell Jim back when I was living in Room 311 that I would be so much better being the one at home and him in the hospital. Well, here I am again, me, the cats, and this time Roo. Jim is at the hospital tonight with Mattie.
On Tuesday night, Mattie was coughing and could not catch her breath. She started to turn blue. I had been a little nervous about her breathing, but this sealed the deal. We were headed back to the ER. Same events again, iv in arm, chest x-ray, blood work, breathing treatments started, nose swabs to test for viruses, and she was placed on oxygen This time a spinal tap was ordered in case it was meningitis. I could not believe this was happening again. We were just released 2 days ago! Dr comes in… she has pneumonia. We were admitted… Room 803 here we come…
I sent Jim home at 4am. No use both of us getting no sleep. At that point Mattie was doing ok. For the next few hours Mattie was up and down. The respiration therapist could not get her oxygen level to steady out. She was at the max oxygen that a nasal canella can give and was still dipping down in the 80’s (Should be 100%). She start to have retractions (the best way to describe is her chest caving in). Her heart rate was in the 200 and she was heavily breathing. A doctor came in to evaluate her and next thing I knew 10 people were in the room. I was pushed aside. A different oxygen machine was brought in, one that would add pressure to the flow of oxygen. I thought her lungs were collapsing. A nurse came over to me and told me to pack up. We were being moved to the ICU. It was almost like an out of body experience. I have had no sleep at this point and Mattie looked horrible. It was 7am. I kept telling myself to hold it together. I finally broke down when her pulmonary doctor came over and gave me a hug and said everything was going to be alright. I called Jim and told him to get here asap. Mattie was not looking good.
As soon as she made it to the ICU, she stabilized. The pressured oxygen was helping her lung retractions. Her oxygen level was steadying out only because they were giving her 60% oxygen at this point. The day went by in a blur. By nighttime, she was doing much better. Her stats were looking good. The breathing treatments were helping and she was eating again.
Jim and I decided to leave her for the night and go home and sleep. We felt that she was in good hands. She was her nurse’s only patient and the nurses station was just a few feet away. Plus this nurse worked in the NICU and was used to being around infants. As hard as it was to walk away I knew we had to. I was working on 2 hours of sleep and could not keep my eyes open a minute longer.
Going home without Mattie was awful. When Joba woke up the first thing he did was run to go find Mattie. I have not wanted to tell him that she is in the hospital. With me being in the hospital for so long, I am not sure how he will handle this. So Mattie has been at “Mindy’s House” the past few days.
I spent the day at the hospital today and Jim went to work. Mattie was released from the ICU around noon and sent to room 219. This time we are in the actual children’s hospital building and it is much nicer. She is stable and doing so much better! She is still needing the pressured oxygen to help her lungs and receiving breathing treatments every 3 hours. She tested negative for meningitis and we are still waiting on the results of the extensive virus test that was done.
Jim and I are going to be switching off night duty through the weekend. No one is sure how long Mattie will be in the hospital. She has to be off oxygen and her vitals back to normal before they release her.
So here we are… again. This little girl might be the strongest person I have ever had a chance to know. Words cant describe the way I feel when I look down at her. She is my miracle. She is our miracle. As a mom I could not be more proud of her and her strength. I told Joba tonight that we had to pray extra hard for Mattie. He looks at me all serious and says amen 🙂 I tell him, yes, that is what we say after our prayers and hugged him really tight.
I know that there have been so many phone calls and messages coming in. I am sorry that we have not gotten back to you. We are so grateful for all the support and prayers coming our way. We could not be this strong without all of you in our lives. Thank you!
7 weeks and 38 weeks, Sunday, May 22, 2011
Mattie has been up and down since my last post. At any given moment she is either doing good or not so good. Right now she is doing great. The doctors told us Friday that she could be here for another 2 weeks. At that point every time they tried to wean her from the oxygen, she had to go back on. Jim had a very rough night with her last night. All the nurses have told me today how bad they felt for him. Mattie was miserable, so bad that Jim finally had the doctor called in. X-rays were ordered and it turned out to be a gas bubble. Jim did not sleep at all and she was up from 10pm – 6am. She is doing better today. They took her off all oxygen support and she is breathing on her own right now. This is a test to see how she does and so far so good but the real test will be tonight when she is in a deeper sleep. Her lungs have been sounding clear, but tonight we noticed a little wheezing. She is still eating great and no fever. She weighed 6 pounds last night!! Tonight is the start of my long stay here. I will be here every night until Thursday when Jim will take back over. My sister and mom are going to help during the day the next few days so I can go home and take a nap. It may be wishful thinking, but I hope that we will only be here for a few more days! Joba seems to be adjusting to the fact Mattie is not home. He still says her name when he is talking about our family, but he has stopped looking for her. He is cuter than ever these days. I fond him in his room yesterday, sitting in the rocking chair, reading books 😉
Hopefully I will have good news to post tomorrow!!!
7 ½ Weeks and 38 ½ Weeks – Thursday, May 26, 2011
We were released from the hospital on Tuesday!!! Mattie was able to go 36 hours without oxygen and her chest x-ray came back “great improvement”. The antibiotic Mattie has been on has had her stomach a mess. She had been in a lot of pain. We stopped the antibiotic a little early because it was effecting her eating. We came home with 8 prescriptions for her 😦 It is almost a full time job keeping up with it.
On top of Mattie being sick, I got a call from Joba’s daycare on Monday that he had thrown up. Off to the doctor we go with him… He was wheezing and had massive green snot. He was put on breathing treatments, steroids, and antibiotics too!! Needless to say, I have been taking care of sick kids for the past few days and I need a break or a drink!! I am at the breaking point with no sleep and crying kids. I am looking forward to going to work for a few hours tomorrow! I feel like that is the only time I can really be productive. I had a mini breakdown yesterday and Jim had to come home from work. I cant seem to be able to handle both the kids without any help. I was supposed to start back to work this week, but with the hospital stay and a million doctors appts going on, I am officially going back in a week.
I had to stop nursing Mattie while she was in the hospital. My milk supply is almost non- existent. I am using all my frozen supply to keep up with her. The stress and non-nursing is really effecting my milk production. We tried hard today and we both ended up crying. I am going to be so disappointed if we can’t do this. We worked so hard in the NICU and the few weeks before she got sick to master this skill. I am going to use this next week to do everything I can to get back to where we were.
We went to our normal Thursday Dr appt today and she weighs 6 pounds, 6 ounces. She is still in newborn diapers and newborn clothes are still a little big, but she is filling out 🙂 She has the biggest cheeks ever!!
Hopefully over this long weekend, I can get the break and sleep I need!
9 Weeks and 0 Weeks Adjusted – Tuesday, June 7, 2011
Mattie has been doing good! We spent the week released from the hospital and the following week nursing full time. She is back at it but my milk supply has taken a hit.
Last week we had her Early Intervention appointment. She failed most of the milestones for an 8 week old baby, but we expected that to happen. We are officially in the program and an interventionalist will be making house calls to monitor Mattie’s growth and development. Her weight last week was 7 pounds!!
Just looking at her she looks perfect. Sometimes I forget about her diagnosis because she is doing so well. Her doctor had mentioned several times that he may take her off her monitor once she reached her due date… I really don’t want that to happen. As much of a pain in the ass it is, I feel like I don’t have to worry at night when I am sleeping (which really is not all that much, now that I think about it). I still am not ready to let it go. We will see what he says this Thursday at her check up. I feel like we turned the corner with her health after this past week. She finally reached her due date and we can start to move forward. I feel like she is not so fragile anymore, although she has been extra cranky this past week. I think she wanted to let us know that she is finally awake and more aware.
I started back to work this week. I have been taking a late lunch and picking up Joba from school and dropping him at my house with Mattie and Nana. It is a nice break in the day to see them and has made the past few days an easier transition. I will have Thursdays off in order to have all Mattie’s appointments that day. It is actually nice being back to work. I need productivity in my life.
We did a photo shoot the other day at the University of Tampa. I know some people have seen the pics on my facebook page, but I posted a sneak peak below for those who have not seen them. I hope to have them all in the next week or 2. They came out fantastic!!
I have decided that I can’t care for 2 kids, at the same time, by myself! We end up all crying and it makes for some major issues. I know that it is going to take some time to get used to, but when I am nursing and Joba has opened the fridge and proceeds to take every thing out of the fridge and open as many things as he can… I will admit… I cry. I ended up buying a fridge lock…and toilet lock, in hopes to save my sanity and marriage. Speaking of marriage… Jim has to be the best husband a girl could ever ask for. He takes turns with me on the night feedings, rubs my feet every night, and puts up with me when I go crazy and cry, and still manages to not go crazy himself! A girl could not ask for more than that 😉 We are sleep deprived and have spent almost all our extra money on Starbucks this past 2 months, but we can still smile and thank God everyday for this little family we have made.
A few years back I put a saying on my wall in the kitchen, “Everyday holds the possibility of a miracle”. I had no idea back then what this saying would come to truly mean to me.
Mattie’s 1 Year Update
Hi everyone!! It has been a long time coming to make a final entry on our CarePage. I have been writing here and there, but our lives have become hectic to say the least, that writing has been put on the back burner. I thought a one year update would be an appropriate way to say goodbye to CarePage and hello to our new Hope for Mattie blog.
I know that from time to time you guys will get an update from us, or a friend, or a family member but here is our year in review from where I left off.
July 2011 – Mattie is 3 Months Old
(Blog entry never posted) Mattie has been in a lot of pain while she is eating. It has been very stressful! We initially thought that she may be allergic to milk. I can’t bring myself to stop breast feeding after all the time and effort it took to get where we are today, so I have been dairy free for almost 4 weeks! This means no cookies, cupcakes, cheese, yogurt, half and half, ice cream, sour cream, (I could go on and on). It pretty much sucks! I eat salads and meat (a good way to lose weight)! We still can’t really determine if she is allergic and she was still not doing well with her eating. In fact, her doctor was getting worried because she was not gaining much weight. So last week we took her off caffeine, increased her zantac dose, and baptized her. We are going to see a GI doctor next week so until then I will remain dairy free. I want to have her tested for a milk allergy so we will see what the GI dr says. Her weight as of this week is 9 pounds 1 ounce.
Her Interventionist had been coming every week, but we decided to meet every other week at this point since she really does not change much week to week. This week she started smiling and cooing a little. It was much needed in our lives to have her do this. For 3 ½ months we have gotten little response from her so it is nice to see it.
Strangers that have heard her story have written us letters and sent her gifts. It has been really amazing to see all the love she gets from people who have never met us. She is quite popular for only being 3 ½ months old 🙂
August 2011 – Mattie is 4 Months Old
GI Dr tells me to go dairy free and soy free. Mattie is allergic to both. I try for 2 weeks to do both and just cant. Here is what I wrote about it: Tonight I am going to have a pizza. This means so much more than meets the eye. A pizza means that I am a horrible mother, a selfish mother. A pizza means that I am throwing away all the hard work I have went through the past 4 months. I just can’t do it anymore. The stress of everything has taken its toll and I need to let something go. I am making the switch from breast feeding to a special formula. I want to puke. (if you have BF before you will understand the emotions I am feeling).
Within a week Mattie stopped being in pain and started eating which led to a little weight gain (now up to 10lbs 13oz). We have her on a very expensive formula coupled with a prescription for her reflux that insurance won’t pay for since it has to be compounded.
My mom, who has been watching Mattie during the day, has to go back to work. Jim and I decide that we can’t send her to daycare due the uncertainty of her lungs, the germs, and RSV season, so our search for a nanny begins. After a few weeks of searching we hire Sarah full time.
September 2011 – Mattie is 5 Months Old
This is a busy month!! We moved Mattie from our room to her crib in her room. We went out to dinner for the first time as a family! Mattie started laughing. Medically we had:
– Follow up MRI – The cysts are shrinking. Her brain is growing proportionally. Nothing else to really report on. She still has PVL (a crazy thought to think since it can’t just go away)
– Hearing tested again – Mattie does not turn to the sound of a bell ringing or have any reaction. She passes the hearing test. I guess there is such thing as selective hearing 😉
– GI and Weight Issues – We are still going to the pediatrician every 2 weeks for weight checks. Her current weight is 11lbs 11 oz (still not on the charts). Her bottle drinking has gotten much better.
– Follow up with her Cardiologist – After an EKG and Echo, her PFO is closed!! She still has a heart murmur but Dr is not concerned. We don’t have to go back for 6 months!!!
– Apnea Monitor is taken away – I was ok with this. We were only using it at night and we had no alarms in months.
– Pulmonary RSV Shot – We start the first of 5 rounds of the RSV vaccine that has to be administered every month at the Pulmonary Dr’s office.
– Ophthalmologist – We start seeing an Eye Dr for Mattie due to her strabismus (lazy eye). We start patching her right eye in hopes to gain strength in her left eye. We have to patch 3 days a week.
– PT and OT – We start PT once a week and OT once a week. Mattie is failing all motor milestones.
It was a stressful month to say the least.
October 2011 – Mattie is 6 Months Old
At Mattie’s 6 month check up she weighs a whopping 12 lbs 8oz! We start the Dr visit with the above list. I know that he has received most of these reports but I was summarizing all her “specialists” for him when he looks up and says “Do you ever take time to enjoy your daughter?” I was shocked! I was angry! I started to cry and could not stop. Looking back on that day, I needed that. It took a few weeks to realize that he was not trying to be mean or belittle all my efforts of trying to “cure” Mattie. He helped me realize that I needed to stop, take a breath and just enjoy her. It had been one issue or one Dr after another… almost like a never ending project and he knew that. If those words came from anyone else, I would have just let it go in one ear and out the other. I never said anything to him about that day, but it really changed my perspective moving forward. I started to fall in love with her all over again. Thanks Dr. B!
Mattie caught a cold this month and we were all impressed that she managed to stay out of the hospital!
November 2011 – Mattie is 7 Months Old
No more bi-weekly weigh-ins!! Mattie is gradually moving up the growth chart at a nice rate. Ok, well she is still not on the chart but making some progress. Her weight is up to 13 lbs 15oz! Another month of recurring doctor and specialists… what else is new?? Oh yea… we put our house on the market!
December 2011 – Mattie is 8 Months Old
We had a speech evaluation done since Mattie was having a hard time eating baby food. She still has the tongue thrust reflex that doesn’t keep any food in. We are given a feeding chair to help support her better while eating. We also use it for playing in since it supports her head and back.
Mattie is officially diagnosed with cerebral palsy. Jim and I had already accepted that this would happen. We knew the signs and they were all there. I did not cry, but when I saw it written down on official Dr letterhead, I finally let it all out 😦
Here is why Mattie was diagnosed with CP:
Impaired Muscle Tone – hypertonic,
Early Hand Preference – Left
Lacks Gross and Fine Motor Skills – Not rolling,not holding head 90 degrees when on belly, not sitting
Persistent Reflexes: ATNR, Tongue (prevents from eating baby food)
Lack of Balance and Control
Language Issues: no vowel sounds
Sensory Integration Issues
Developmental Delay: Not reaching key growth milestones even when adjusted for prematurity
History of PVL – 75% chance of CP
I start looking more into alternative treatments for Mattie. I am on a lot of group message boards and I start following and researching what other parents are doing. We start Craniosacral therapy. CST is an alternative treatment in which a therapist focuses on the craniosacral system (spine, skull, and central nervous system). Using light touch, the therapist can open up restricted nerve passages and allow cerebrospinal fluid to better flow through the spinal cord. When this fluid is allowed to flow unrestricted, a rhythm of fluid is established that allows for a proper balance between the brain and spinal cord. Our neurologist thinks it is a bunch of BS! Do we see a difference in Mattie??? YES!!!! After just 3 sessions, Mattie became verbal, was able to separate her upper and lower body, started to roll from tummy to back and was more in tune with her movements. She was able to grab her feet for the first time without assistance! Some might think it was a coincidence, but you really have to see the before and after results to really believe that this alternative therapy is working. We commit to paying out of pocket for weekly sessions.
January 2012 – Mattie is 9 Months Old
We buy a swing to hang from the ceiling to start swinging Mattie from it. She has a lot of issues with motion and can’t stand the car. The swing will help her vestibular system integrate. Our OT came up with the theory that the reason Mattie may have so many motion issues is because she had no fluid to move in while she was still in utero. It makes perfect sense!
We bump our OT up to 2x a week. Mattie is now 15lbs 8 oz and on the growth chart!! Woohoo!!! Mattie finally starts to eat baby food this month.
We are accepted into Shriners Hospital for Children. We meet with an orthopedic doctor to see if they are going to brace Mattie’s feet/ankles. X-Rays are taken and structurally Mattie looks good. We are sent down to the Orthotics department so Mattie can be molded for AFO’s (ankle-foot orthosis) and told to get a stander for her. We also meet with a Shriners OT there and Mattie is fitted for a hand splint for her left hand. We are able to get a stander, on loan, from our early intervention program. Although Mattie is still really small we make a few adjustments to it in order to get her to fit. Her PT tells us Mattie is the youngest child she has ever seen in a stander. We are trying to be proactive. Although Mattie can bear some weight on her feet, she tires out in less then a minute. Mattie is very uncomfortable in the stander so we temporarily stop using it until she grows a few more inches and can fit into it better.
This month is our first trip up to Gainesville for an alternative therapy called ABM or Anat Baniel Method. We are going to spend the night and do 4 sessions. With ABM “A child is guided through gentle movements executed with close attention to what they feel as they move, and as they are introduced to the other Eight Essentials, their brains take the information and grow new and elaborate neural connections in response to their experiences”. Check out Anat Baniel’s site yourself: http://www.anatbanielmethod.com/children/children-with-special-needs. (I will write more on this amazing alternative therapy later).
February 2012 – Mattie is 10 Months Old
Mattie is fitted with her custom AFO braces. Although she does not mind wearing them, we start her out slowly by putting them on for an hour at a time. She is now wearing them for 6 hours a day.
Mattie moves up to 16lbs 8oz and FINALLY gets her first tooth!!
We head to Gainesville again for ABM. This time we only can afford to do 2 sessions so we go up for the day. The next day we put Mattie on the floor as we always do since she is not mobile and walk away. 10 minutes later I find her ½ way across the room! She can roll!! Not just from belly to back like she had been doing but a full on back-belly-back to actually MOVE ACROSS THE ROOM ROLL!!!!!!!!!!!!!!!!! I started crying and laughing and crying some more. I have never felt more proud of her in the past year as I did at that moment. I felt like everything we had been doing, all the sacrifices we had been making were finally paying off!
We cant thank you enough for all the lovely messages you have left, all the prayers that have been prayed, and for all the positive energy that has been sent our way this past year. Please continue your prayers and positive thoughts for Mattie. They are working!
Continue to follow our journey at hopeformattie.wordpress.com
Steady as we go…
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Thank you for taking the time and writing this!!! We had the same experience with our son, and I was crying reading this. How is she doing now? Wishing you all the best!
Thanks Katia! She is doing very well. Growing up way to fast! I wish you and your son all the best!!
Thanks Katia! She is doing very well. Growing up way to fast! I wish you and your son all the best!!