Looking back at the days when Matildas fate was still uncertain. It was absolutely excruciating leading up to her delivery. I was paralyzed with Fear. We had to go see the fetal care specialist once a week. I remember the week leading up to Matildas birth. It was snowing and ice storms......not to be confused with actual ice storms......these were Texas ice storms which meant a little bit of ice and a lot of panic! As the fetal care specilaist assessed Matilda with the test they had. It was always well she wont run a marathon but she will be ok. The day before I had Matilda I saw Dr. Youst. She did a test to see what Matilda's breathing was like in utero since technically they don't have to breath. She put this vibration on my belly and she said now this is going to also test to see if Matilda will sleep in when her alarm goes off or hit the ground running. She then turned on the vibration and Matilda woke up right away and you could see her chest breath in and out. It was such a beautiful sight to see that in case Matilda never did get to breath on her own on the outside I would at least get to see this glimpse on the inside. It was beautiful! And Dr. Youst said this is so good!!! She is going to be fine and you tell me in 10 years if she sleeps in or not. I left the office relieved but still petrified with fear.
And then she was born....in the NICU for six weeks and still heard the same "She won't run a Marathon but she is going to go home". So in my head I thought ok we will put her in music classes, art, anything where she isn't running. Then I would get sad as I knew she would want to run after Freddie, play team sports, I was relieved she couldn't run after boys! I knew I would have to tell her it is unfair that she has to be still, but how grateful she should be that we are even able to have this conversation.
On Monday we had a follow-up appt with the pulmonologist. This was to decide if he wanted to see her once a year. She never actually saw a pulmonologist while in the NICU so I was curious as to what Dr. Copenhaver had to say.
Matilda was cheesing it big time smiling and talking to all the staff at the office. Dr. Copenhaver went over her history with me which he was very happy with her progress. Then came the big part where he listened to her. I actually couldn't breath as I was so nervous, he was going to have something bad to say. He looked at the med student that was with him and said sounds absolutely normal. I said "SHE DOES?!" He looked at me and said if she wants to run a Marathon one day she can! I got a little tear in my eye but held it together because I don't ugly cry in front of strangers and I don't think Dr. Copenhaver knew what the word MARATHON meant to me. He then said ok I don't want to see her unless you need to see me! Which again I held it together.
I know we don't know what the future holds for Matilda as she is at risk for different things. But I am so grateful that we need to call them, and that she doesn't have to be followed up. Matilda is still such a happy baby. She only ever crys if she is hungry......but don't we all! It's as if she knows how lucky she is.......and for that she is so grateful. She is my role model. I strive to be as brave as she has been. The Irony is Matilda is already running her marathon and we just need to keep up with her.
love to you all!
Thursday, July 16, 2015
Monday, July 6, 2015
Waltzing Matilda
Listening to the song Waltzing Matilda sung by Rod Stewart, Matilda crinkles her nose and smiles as I sing the words along. My mother in law played it for paul and I before Matilda was born. My mother in law smiled and said," isn't it lovely!" To which we both responded yes. But was actually hard at the time as I didn't know what occasion this would be played at. So being able to sing it to a vibrant happy baby means so much. I just can't believe she is three months old today. Which means she has been home just as long as she had been in the hospital. And what an interesting six weeks it has been.
Matilda and I have been enjoying getting to know each other and as I always say to her BFF. We have filled our time having lunch dates with friends and NICU nurses. We also have had follow up appointments. Her pediatrician was so pleased when she saw her. As she got the news about her condition and knows that they don't always turn out so lucky. We were actually dealing with Matilda's weight gain when we came home. I blame pier pressure in the NICU. Matilda was bigger than alot of the babies in there, so its only natural she might feel a bit self conscious about her weight ; )
Anyway we had to go to the doctor for a weight check from the Friday till the wednesday and luckily Matilda had gained weight so we were in the clear. We also went and saw Dr. Roden for matilda's surgery follow up. He was very pleased with her and mentioned to us that he had done alot of hernia repairs. One recently he did unfortunately the poor baby hardly had any lung, and did not survive. Hearing stories like this just reminds us how lucky we are and how different this all could have been. I recently joined an organization called cherubs which sponsors research for congenital diphragmatic hernia children. They actually have state representatives, Our rep in Texas lives in Dallas. Her daughter was born with it and is 23 now . She has been very supportive as I still get a bit anxious about everything. We went in for Matilda's 2 month check up and her weight was down again so I nursed her every hour with her regular 3 hr bottles. When we weighed in again she was back on track and when I had another weigh in just to check 3 weeks later she was exactly where she needs to be. So that made us very happy. As I always have the fear that she would be in the failure to thrive category and would need a feeding tube.
Other than that Matilda is a very happy little girl. Her face lights up when you talk to her. Its as if she knows how special she is and what a gift she has been given. Her little brother loves her so much. He calls her Da........which sounds like DuuuuH! So not the cute nickname I thought but actually its perfect for them. He tries to help in any way he can!
That's it from us! till next time
Matilda and I have been enjoying getting to know each other and as I always say to her BFF. We have filled our time having lunch dates with friends and NICU nurses. We also have had follow up appointments. Her pediatrician was so pleased when she saw her. As she got the news about her condition and knows that they don't always turn out so lucky. We were actually dealing with Matilda's weight gain when we came home. I blame pier pressure in the NICU. Matilda was bigger than alot of the babies in there, so its only natural she might feel a bit self conscious about her weight ; )
Anyway we had to go to the doctor for a weight check from the Friday till the wednesday and luckily Matilda had gained weight so we were in the clear. We also went and saw Dr. Roden for matilda's surgery follow up. He was very pleased with her and mentioned to us that he had done alot of hernia repairs. One recently he did unfortunately the poor baby hardly had any lung, and did not survive. Hearing stories like this just reminds us how lucky we are and how different this all could have been. I recently joined an organization called cherubs which sponsors research for congenital diphragmatic hernia children. They actually have state representatives, Our rep in Texas lives in Dallas. Her daughter was born with it and is 23 now . She has been very supportive as I still get a bit anxious about everything. We went in for Matilda's 2 month check up and her weight was down again so I nursed her every hour with her regular 3 hr bottles. When we weighed in again she was back on track and when I had another weigh in just to check 3 weeks later she was exactly where she needs to be. So that made us very happy. As I always have the fear that she would be in the failure to thrive category and would need a feeding tube.
Other than that Matilda is a very happy little girl. Her face lights up when you talk to her. Its as if she knows how special she is and what a gift she has been given. Her little brother loves her so much. He calls her Da........which sounds like DuuuuH! So not the cute nickname I thought but actually its perfect for them. He tries to help in any way he can!
That's it from us! till next time
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