Since our last post, Haven has struggled with a couple of issues. Last night, though she was tolerating milk through her feeding tube, her body didn’t seem to know just what to do with it from a digestive standpoint. At surface level, it appears that when food goes into her stomach it stays there and doesn’t move on through the system. Therefore, as food keeps going in, it just inflates her stomach more and more until the natural reaction is to throw it all back up. So, they have decided to stop her feeding until they can do some testing to figure out what the problem is exactly. Read the rest of this entry »

Haven started receiving milk through her feeding tube today. She’s been getting it very slowly over the past six hours and has kept it all down. We’re thankful for that! She’s having some problems with the drainage tube in her chest, so the doctor is coming down this evening to decide what to do with that. Rumor has it that if Haven does well enough this weekend, she may be moving out of the Intensive Care Unit and in to a less critical unit sometime early next week. That would be wonderful–just one step closer to going home!

Haven had a good night last night and so far today her numbers have been holding steady.  She’s been awake most of the morning and fussing quite a bit.  They started feeding her pedialyte through her NG tube as well.  So far, she’s kept it down.  It seems that the next big obstacle is getting her diet problems fixed.  The main issue here is that she hasn’t eaten hardly anything in her 5 1/2 weeks of life so her stomach doesn’t take food too well.  They’ll be trying a couple of things to get her to respond well to getting nutrition through actual food in her belly.  Thankfully, since she is off the ventilator, we were able to hold her for a little while this morning.  Hopefully, things will keep moving in the right direction.

We couldn’t get to a computer last night to post an update for you, but no news is good news. She has remained steady as she has been weaned off of her blood pressure medicine and is being taken off the ventilator as we are writing this (they ask parents to step out of the room for that procedure). She will go back on oxygen only through her nose. We are still dealing with some tummy problems. Hopefully pulling her off the ventilator will help that and she will be able to stay steady breathing on her own.

The people here always say that boring days are good days. We couldn’t agree more. They just want Haven to relax today to try and gain strength after yesterday’s ordeal. The paralytic is slowly wearing off and she is slowing waking up and moving around a little. She’s still on the ventilator, but they are hoping that she will feel well enough tomorrow to try to begin weaning her back off. She is a bit puffy. This scared us at first (brought back memories of the 17 pound baby we had a month ago!), but we’ve been assurred that swelling and fluid retention is normal, especially after heart surgeries. Hopefully, her kidneys will kick in full steam this time. Mom and Dad have also taken advantage of the boring day to recooperate from all the excitement. It’s amazing what milkshake will do…..for Mom & Dad (not Haven).

Haven is back in her room now after surgery. They opened her chest again in order to make some corrections to the reconstruction of her heart (surgery #6). These adjustments seem to have made the problem better for the time being. The surgeon said her cardiovascular system is very sensitive to even the slightest changes — one of the most sensitive he’s seen. This means that a very fine line has to be walked when trying to find the right balances for Haven’s heart to function. As we saw this morning, if conditions aren’t quite right, things can get complicated real fast. The adjustments they made today seem to be working for now. She has been back on the ventilator (which is breathing for her) since the emergency this morning. They want to try to get her to be breathing on her own again as soon as possible. Currently, she is sedated and paralyzed again so she can rest through the night. They say this is quite a set-back, but Haven will continue to fight through this battle as she has with all the other battles she has faced in her short, five-week-long life.

This morning Haven has taken a step back. Word says that her lungs are not getting enough blood (the opposite issue she had during her first HLHS surgery). However, the doctors are confident that they know what to do to correct this insufficiency. 

As soon as they can, they will put Haven back into surgery and take off a restrictive band on her heart so that more blood can reach the lungs. Hopefully this will put us back on course, but as with any open heart surgery with a special baby like Haven, nothing is 100%.  

Just like the saying goes we are doing a dance and Haven has the lead. When she decides to take a step back we follow in step.

Keep Haven and her doctors in your prayers as she goes back to surgery this afternoon.

Uncle Justin

Early this morning, the doctors decided to pull out one of the two chest tubes she has left. They will continue to watch to make sure fluid does not build up in her chest, but we are excited that she has one less tube. Mommy was feeling under the weather this weekend so Daddy has had plenty of practice taking care of two women. Today’s nurse even assigned him some of her tasks. As Mommy was sleeping in a chair, she heard the nurse call in “Okay, Dad.” That meant he was to perform Haven’s bi-hourly care… diaper changing, taking her temperature, changing her position, and cleaning out her mouth, etc. By the end of the day he was able to do all but the mouth cleaning without an auditory complaint from Haven. We won’t mention how many diapers Haven went through in one changing… let’s just say she likes to wait for a clean diaper until she does her business. She has been sleeping a lot today, but wakes up once in a while to charm us. Grandpa and Grandma McMullin thouroughly enjoyed their time “babysitting” this weekend and many nurses pop their heads in the room just to admire how cute she is. We couldn’t agree more!

Today was similar to yesterday though she seemed to be feeling a little more comfortable. She’s been charming us with her precious cry, big blue eyes, and high-pitched little coos. We were finally able to get her to take her pacifier without gagging on it or just letting it fall out of her mouth. We were also able to get a few video and sound clips taken today with the camera. We’ll work on getting those up on the site within the next few days for you to enjoy.

Haven has been sleeping most of the day today. Although it looks like she’s off of the ventilator for good, she struggled today with several issues. Besides her fever, she has been back and forth with her blood gas (oxygen & carbon dioxide) levels. She has been very irritable and uncomfortable as well, but this evening she was able to relax for a few minutes. We can tell she’s getting sick of this hospital stuff (all those tubes in her nose and chest and other places), but she’s a fighter and she’s come a very long way. We are so thankful for our little family and the precious time (one month today) we’ve all had together. Hopefully, tomorrow she’ll be feeling better and be able to enjoy us as much as we enjoy her.