It has been craaaazy around here. Avery turned the big 2 on Feb 27 and we had her Dora birthday party at the wonderful playground at Christ Chapel...unfortunately the poor birthday girl had to leave right when it started because the stomach bug struck... hard... 30 minutes before the party started!! So her friends and family enjoyed the party and cake and she opened her gifts later that night when she was feeling a little better. Her appetite did not come back for a week! Literally. The rest of us got it a couple days after she had it...wow oh wow... I literally have not been that sick in years, fever, aches, chills, pregnant with a 2 year old running around. NOT fun. But we are well now and loving the warmer temps.
I will be 32 weeks along on Monday, March 17. My belly is huge! Hallie moves a lot! She has some sharp knees and elbows I tell ya. Last Wednesday, March 5, we had our 2nd echocardiogram with Dr Roten and met the surgeon, Dr. Tam. Such a long day! The thing is, on a day to day basis, I sometimes forget what is going on, and we all feel normal... then you have a day like that where you do nothing but think about it and it is so exhausting! I've said it before but its the same every time...it takes a couple of days to come down, back UP rather, from that. Its emotionally taxing. The echo showed everything to be the same as before and progressing at it should... Dr. Roten does not feel she needs to see us again until Hallie is here...which is good b/c they do not think they will see any changes in the things the echo is picking up...but the reality is that we really do not know the whole picture until Hallie is here. Unsettling, but I get it. Dr. Tam is fabulous. I feel Hallie will be in great hands. He is very knowledgeable, very impressive, and very personable. I just like him. He is an optimistic type person and says he will only be optimistic with us. He did not have a whole lot of heart info to add really because Dr. Roten has done an exceptional job of informing us and answering every tedious question we have. He stresses that we have to take these surgeries one at a time...we have a long road ahead of us, take it one day at a time...every heart and every baby are different thus making our journey different from anyone else's....that we can not compare our baby's issue to anyone else's because these situations are so individualized...what happened to the family next to you with the same defect may not happen to you at all and vice versa.
I read somewhere that you have to look at each baby's heart as if it were a snowflake... there are no two alike.
As for my OB appointments and labor etc... They are now saying I will not go past 41 weeks (May 19) and more than likely not even 40 weeks (May 12). If I am not showing any labor signs at 38 weeks, and depending on baby's estimated weight. then we will likely schedule a C-section. I will not be induced because they do not like to induce VBACs because the Pitocin is too harsh and makes contractions too strong for a uterus that has scar tissue/has already been cut once. They do not want to go too far past my due date because of the risk of baby having a bowel movement and ingesting meconium (baby poo)...that can cause respiratory infection and the lungs have to be as healthy as possible. SO... as much as I hope and pray I go into labor on my own and its a normal, easy, fast, perfect delivery...I am not getting my hopes up. There are 2 main reasons I would prefer a regular delivery over a cesarean...
1. It is great for baby to go through the birth canal to squeeze out the excess amniotic fluid from her lungs... I worry about those lungs.
2. I will get to hold her for 10 minutes or so before they take her to the NICU.
Then we won't get to hold her for a week... except a few minutes right before her surgery.
With a C-section the likelihood of ME getting to hold her is slim. Donny will hold her, I will get to see her right up next to my face but my arms will be strapped down and by the time they sew me up, which takes about 20 minutes in a perfect world, she will have to go on over to the NICU.
Maybe #2 is a selfish reason... but I won't do well with that... I already know it. They will wheel me over to see her and all...and we can touch her...but you mama's know its just not the same. Longing to hold a baby you have been carrying in your belly for 9 months and then you can't hold them in your arms... torture. We will get through it tho. It is what it is.
I have been asked a few questions and thought I would answer them here incase anyone else was wondering the same:
One term a lot of people, including myself, have trouble with is what to call "normal" babies verses what you call babies with CHDs (Congenital Heart Defects). The term "Heart Healthy" is what is used throughout the CHD community to differentiate between the two. For example: Avery is my heart healthy daughter. OR Avery is Hallie's heart healthy sibling.
- What is the name of the defect Hallie has? She has Hypoplastic Left Heart Syndrome... HLHS for short. I usually call it HLHS. When referring to defects in the CHD community I would say "my HLHSer". Such as "Avery is my heart healthy daughter and Hallie is my HLHSer."
- Will she weigh the same as a heart healthy baby? At first most likely she will, unless she stops growing in utero at some point, which they do not expect but... Another wait and see.
- Will she grow the same as a heart healthy baby? Maybe, maybe not... it depends on her and how she feeds and how her body processes her feeding. She will get nutrients no matter what, even if it is through a feeding tube but its not like with a heart healthy baby...you feed them until they're satisfied, some eat more than others, g-tube babies have a little more of a standard amount they eat and when you introduce bottles they burn a lot of calories b/c it takes a lot of work for them to suck, they are not use to it b/c it is not something they do immediately after birth. So, again, we just wait and see...
- Will she reach the same milestones as heart healthy babies? Most CHD babies are behind on their typical milestones. Eating of course is a big one, fine motor skills, sitting up, crawling, walking... all will be most likely be delayed. A lot of that too has to do with the 2nd surgery happening right in the middle of their first year...if you had open heart surgery it would be difficult for you to get around too! They do catch up eventually, maybe at a year, maybe at two... Every baby is different!
- When will Hallie go home from the hospital? Wait and see. Hopefully a quick 4-5 weeks and we're outta there... some babies stay until it is time for their Glenn (2nd surgery)..some split the difference. There are just so many factors involved.
- What can she wear in the hospital? At first, she will just be swaddled in her diaper. Then we can put things on her that do not go over the head, do not cover the feet, and can button down completely... she will have a lot of wires and lines that do not come out...it needs to be as easy as possible to get the outfits on and off to change diapers, change/check dressings and monitor her in general. Also she will have a pulse ox machine on her foot, so that is why no footed things. She can wear baby legs, ruffle butts, side snap onesies and gowns, convertible gowns, hats and bows.
- Will Avery be allowed to see her? Not in the NICU. They only allow children 3 and up...and that is where we will be a majority of the time. The CVICU is where Hallie will be right after her surgery and they will allow Avery in there to see her. We will be in there at least 3-4 days.
I am so thankful we have God in our lives. Where would be without him... I shutter to think.
My prayer is simple:
Thank you God for being in our lives and helping us through this situation. No one else can do it but you. We have a long road ahead of us. We do not know what is in store for our family but we have faith and hope in you and that you will take care of us each step of the way.
When you pass through the waters, I shall be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.
Isaiah 43:2
