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Looks like we have one more day of Ava being at Stanford. The renal doctors want to watch her blood pressure for one more day. Also, she is going home on a few medications and follow up care, so they want to make sure everything is lined up and that we understand everything, etc. So....hopefully tomorrow will be the big day!
It looks like Ava *may* come home today - hooray! When I left last night, her doctor said that if she had a good night with feedings and with her blood pressure, she may be getting a bus ticket out of NICU. I called this morning and she did indeed have a good night. The doctors haven't done their round yet this morning, so we'll have to wait and see what the ruling is. Stay tuned for more info!
Happy 3 week birthday, Ava! Today she had her very first bath (wow, she needed it!) and it was nice to give her a nice shampoo and wash. She didn't like it too much - those hospital towels are kind of rough and the baby bathtubs are not the easiest to use - and the effort knocked her out quite a bit. She slept like a baby afterwards :)
Ava had a restful holiday weekend. She got her PICC line out (the semi-permanent IV line in her arm) and we mainly worked on feeding. No test results have come back since it is a holiday weekend (slightly frustrating), so we have been focused mainly on tracking her blood pressure and her feeding. With regard to her blood pressure, her doctors have been making slight adjustments in her medication based on her readings they take very few hours. We are trying a patch delivery method of some medication that she will probably come home on and she seems to be responding well to that. She is still getting some oral blood pressure medication as well and the hope is that her blood pressure will continue to trend downwards to the point where that can be discontinued. The doctors are working on getting her a home blood pressure cuff/reader and a plan for treating her at home.
As for feeding, many babies who have been as sick as Ava has have feeding issues. This is understandable, as most of what has been put in her mouth for the past 3 weeks has been unpleasant! However, Ava is breastfeeding wonderfully. The problem for her is the bottle. This is a little backwards as many babies in the NICU take to the bottle quickly (because it is easy) and then have trouble nursing. I wish I could be there for all her feedings, but it is not possible right now. We might have to stay there at the hospital for a day or two to do all the feedings before she can come home, but we'll see. We are trying to keep things fairly "normal" for Ben and Lily as well, so it is a bit of a juggle. Right now I am there for 3 feedings a day, out of 8. She is getting better with the bottle, with the help of a "Haberman" bottle, so hopefully that will continue. She did gain weight today, but we need to see the trend upwards continue for a couple of days before we can be confident in her feeding abilities. The doctors want to be sure she is feeding very well before sending her home - if they rush it, she could be readmitted after losing weight and then we would also have malnutrition issues to deal with. So we are trying our best to be patient.
After yesterday's events, today was such a nice relaxing day. Last night, Ava was still quite sleepy from the morpine given to keep her still during the CT scan. She started to wake up this morning and was ready to eat! This afternoon the doctors decided to take out her feeding tube and treat her like a normal healthy baby who is hungry. She nursed like a champ for the first time. Hooray!
As for where things stand with her hypertension, her blood pressure has gone down a lot and they have not had to increase the medication to control it. This is great news and perhaps means that the issue (whatever it is - a clot in the aorta near the kidneys that is getting smaller or something else) is resolving itself. More tests still to come back, but amazingly her doctors have started discussing preparations to take her home (working on feeding, getting her a home blood pressure cuff, trying out a patch delivery of medication for her blood pressure, etc). We don't know when exactly this could happen, but I have to say that it is quite a surreal experience (a happy one too) to go from one day contemplating pretty major surgery to the next preparing to take her home!
We can't say enough how much it means to us to have everyone's support. THANK YOU for following Ava's story and for offering your help in so many ways. We have received so many emails, phone calls, etc. from all of you expressing your concern and your prayers. Thanks especially to Robin, Hannah, Nana Karin and Grandpa Steve who have been taking care of and entertaining Ben and Lily (they even organized a "bunny party" the other day), straightening our messy house and being there in every imaginable way, and to Jen and Marya who showed up unannounced at the hospital yesterday and got the good news of Ava's CT scan with us and who got us out to Bonfante Gardens this morning to have a little fun with the gang. You guys are really the best!
Stay tuned for more info - hopefully we'll get getting some more test results in the next day or so and will know more of the plan soon.
We just got the good news that the CT scan of the aorta came back and there is no coarctation. This means the heart and aorta near the heart looks completely normal, so no surgery is needed. Whew! We are still waiting to determine the cause of Ava's hypertension (more tests outstanding...), but this is a big relief to say the least.
Ava is being prepped for her CT scan right now. The scan will happen around 11:30 (or so - they have to coordinate all the right people being there). She will be sedated with Ativan and will be intubated (put on a ventilator) to keep her calm, comfy and completely still for the scan. There was some debate earlier this morning about whether or not the CT scan would happen today - they were considering doing an MRI as an alternative, because 1) the CT scan involves giving contrast which can be damaging to the kidneys and there is a possibility that her kidneys may be what is causing the high blood pressure so we don't want to do any further damage if we don't need to be, and 2) the coarctation, if there is indeed one, seems to be quite mild (for the medically inclined the reasons why they think it may be mild are: the flow of blood through the artery is not impaired, the blood pressure difference between her upper and lower extremeties is not huge and her femoral pulse is normal) and Ava is not in any immediate danger. The decision was made to go ahead with the CT scan today, mainly (we think) because of scheduling - a CT scan can happen today whereas the MRI we may need to wait a week for and there are risks to Ava being hypertensive (having the high blood pressure) for a week while we wait.
If a coarctation is found in the CT scan today and it is determined that action should be taken, there is a (slight) chance that Ava may go into surgery this afternoon(AKK!!). We think this possibility is actually fairly low (again, because the coarctation seems to be quite mild), but you just never know. We are trying to be prepared for any possibility and things can change very fast around here.
We'll try to update this as quickly as we can, as we know everyone is very worried (as we are). We have recevied some great confirmation that Stanford is the best place to be for Ava right now. It is good to be in the heart business! (Thanks to Fred, Amr and Dr. Ziyad Hijazi...)
To keep our spritis up here, we are trying to keep in mind our fortunes from after lunch yesterday. Jeff's read: "Be patient. Good things come to those who wait." and Linsey's read: "You are in good hands." :)
Here are some pictures of Ava we took this morning before the hoopla began. Enjoy...
Ava was a busy girl yesterday after her transfer to Stanford. She had many tests - kidney/renal ultrasounds, echocardiograms (ultrasounds of the heart), a spinal tap (the 3rd try for her - poor girl!), and got a PICC line put in (this is sort of like a semi-permanent IV and is an alternative to the many IV sticks she has had and will continue to need). Last night we learned that the cause of her very high blood pressure may actually be a heart problem called a coarctation of the aorta (bascially a narrowing, twisting or constriction of the aorta), so she is having a CT scan today. This is a pretty big deal for such a little girl, so she will need to be sedated and may go back on the ventilator. She basically needs to stay perfectly still for the test, so this is the reason for all of the support. The CT will happen sometime today and will then need to be read by the one guy at Stanford who is qualified to interpret the results. So we're not sure when exactly we will get results.
From my understanding this condition is difficult to diagnose, which may be one of the reasons why we didn't see this before now, even though she has had many echos before. If she does indeeed have this condition, we may be looking at surgery :( Anyway, that's the latest for now... stay tuned.
Just when we were starting to be confident about Ava's recovery, we've been thrown another curve ball. Yesterday, Ava's blood pressure started to skyrocket out of the blue. They are trying to determine the cause – looks like maybe it is a small clot in the aorta near the kidneys. Other common causes for this sort of thing could be something to do with her heart or brain (early indications are that these are not the culprits, which is good, but we’re still waiting for comprehensive studies to be done). She was transferred from Good Samaritan Hospital in Los Gatos to Lucille Packard Children's Hospital at Stanford last night (Stanford is no stranger to us and it is a great hospital, but it is a 1/2 hour away as opposed to 2 minutes, which will make all this coordination even tougher). Ava is very stable and they are controlling her blood pressure with medication which they search for the cause. She is in for a new round of tests today.
We are really hoping this is something minor and simple to fix…. This continues to be quite the rollercoaster. We got a really good feeling about the Stanford NICU tonight (they actually asked me if I wanted to breastfeed when we got there!), but it will make it all the more tough to do this back and forth thing with all of the driving, etc. And, of course, the really hard part is that we felt like she was on her way to recovery and was doing so much better, and now we have another bump. More later…
Ava moved into a new bed today. It takes up such little space, compared to the isolette she was in, that just a week ago was so surrounded by machines that you couldn't walk around one side of it.
Ava was very awake today. She is having some trouble with feeding - but she just started eating a few days ago and, after being so sick, it is not too surprising. She is losing a little bit of weight, because she is expending too much energy during feeding times. So...We have made a plan with the nurses to let her rest a bit more by feeding her through the gavage tube 5 times a day and the other 3 times by breast/bottle. Jeff and I will be doing the breast/bottle feedings (you can figure out who has what duty!). Hopefully this will result in her having enough energy to learn how to eat. Experience-wise, she did great today with feedings. She was very alert and really trying - it is a vast difference from where she was just 2 days ago or even yesterday. She's acting more and more like a normal healthy newborn - and even doing those newborn smiles that are so cute!
It was an eventful weekend for Ava. She: 1) entertained visits from her Aunt Lisa (from Seattle) and Aunt Robin (from St. John's, Newfoundland), 2) made a move from the critical NICU room to a room with more stable kids, 3) started working on feeding from a bottle and breast, 4) (on Sunday) came off her oxygen canula support altogether, and 5) got to be taken out of her bed and held (hooray!). She still has about 10 days left on one of her antibiotics, which is all given via IV, but apart from that, she basically just needs to learn how to eat. Her respitory issues are pretty much all resolved and we are so relieved. She is looking more and more like a normal baby - much less swollen and sleepy from all the drugs.
We are pretty exhausted from keeping the schedule of taking care of Ben and Lily, running back and forth from the hospital to spend time with Ava, and (me) getting up all through the night to pump milk for Ava. But... I am sure once she is home we will be even more tired!
Thanks to everyone for all of your thoughts and prayers - we think we are through the worst now and can't wait to bring her home. :)
