I forgot to mention the other term I learned yesterday – stabley unstable.. That is what Finley has been. When I say Finley is stable- it’s not like when talking about a normal baby- she is somewhat stable for a critically ill baby. Stable is still good, it just needs to be understood in the right context. She has had her bad moments- about 3 episodes of de-sat in the last 24 hours (one was because they did try to move her vent settings down, and she let them know she wasn’t ready). But she has had good things too- like her blood/gas numbers were good enough that they wanted to try the lower setting. Also, they said that it looked like her lung expanded a bit more (can’t recall which one) which should help a little with the PH (pulmonary hypertension). She opened her eyes a little bit today too- and it was so great to get to look in her (what appear to be) blue squinty eyes. She has been pooping – which is really good that the bowels are working. She is getting a little jaundiced and is starting to swell some. They say take things each hour at a time.
I am happy that my milk has been coming in – each pumping I am getting more. It is the only tangible thing I can do for her, so that is my full time job right now.
Time passes differently in a hospital – I keep forgetting what day it is and it just doesn’t seem right that Finley is not even 72 hours old yet. Thank you so much for the messages, texts, emails, etc. We really love reading them!
Yesterday was a turning point for me in some ways emotionally because I think it really hit me that we are in fact on a long journey – another mom used the term, marathon. I think in some ways even though I knew this information at a cerebral level, it really just sank in yesterday. I keep reading through the verses that have given me strength up until this point and I know pretty soon I will have them all memorized. Walking in faith and trusting in God has gotten me this far, now just need to do all the same things for this next leg of the journey.
Rowan and my parents came and visited today and we spent some time in the outdoor Children’s Garden – it was my first time off the 2nd maternity floor since Thursday. It was a good first step in reminding me of the world outside and eventually moving towards making myself leave here occasionally. It’s a beautiful garden if you ever have the opportunity to see it.
So our nurse sat down with me around 5:30 because she is also one of the ECMO coordinators and is well versed with CDH babies and wanted to answer any of my questions and make sure we understanding everything. Here are some of the highlights learned…
1. We are currently in the honeymoon period, so we don’t really know anything yet…
2. Finley has mild to moderate pulmonary hypertension- no one had explained it that way yet.
3. She had a very bad hour today around 4 when she tried to move her to her side and her heart rate went up high and it took Finley over an hour to come back down- that was not good.
4. It is really important to keep stimulation to a minimum for Finley – that means lights, voices, etc.. We will need to keep her visitors to a minimum and if we do let you see her, remember to keep your voices low and don’t be upset if we don’t let you stay in the NICU for very long. Also, things can change quickly so we may tell you it’s ok to visit and then it’s suddenly not ok.
5. She really wanted me to know that I need to leave the NICU every day and see the world outside, I need to keep myself healthy (if I am sick I cannot see Finley in the NICU), etc. She said to have people maintain a single point of contact for information (IE – this blog) so that I don’t have to repeat myself with the same info and drain myself further by saying the same stuff over and over…
6. We also talked about typical issues CDH babies will face down the road, respiratory, feeding, physical, etc… Some things I knew, some things were new.
All in all, it was a really good conversation – though very heavy and took it’s toll on my emotions which are already very raw today – I think my milk is very close to coming in on top of all the other hormones going crazy in me, and a slightly stressful situation. So I have cried a lot today. Going up to see Finley at 8:00 after the shift change to bring her some gifts from home, see her diaper change and bring her more pumped goodness – finally getting out enough colostrum to deliver to the freezer!
Spent some uplifting time in prayer with Jeremy & Erin Cowan and Cody Schuman today – so thankful for the many, many friends, family, and others we don’t even know sending up prayers on Finley’s (and for Jon, Rowan and my) behalf. Prayers are our food and water.
Finley is holding steady which seems to be a very good thing… Throughout the last 24 hours she has fluctuated between 30-40% oxygen requirements, but all her numbers are holding steady and as the doctors are saying “things are as we would expect them to be” for a baby with CDH. We are waiting (and praying) for her pulmonary hypertension to go down and for them to be able to wean her down from her oxygen and get her back on the other ventilator- so they are definitely steps we are waiting for – but knowing how much worse things could be – we are happy for her to just be taking things slowly. I got to wash both her legs todays (2 separate visits) and Jon got his first diaper change and temperature check. This morning they had to change her ventilation plate, adjust the tube because it wasn’t in the right position, adjust her PICC line (also not in the optimal position) and then do X-rays to confirm placements. They also were adding a CO2 sticker- still needing to learn how that works. All the medical equipment, jargon, etc is a tad overwhelming, but they tell us by the time we leave we will be experts.
This morning was a little rough since it became official that I am being discharged today and I was pretty emotional about that, but the awesome nurses here are going to let us stay in the room one more night. Sunday I will probably sleep in the NICU if there is an open cot. The thought of not being just down the hall from her is extremely hard. Last night, after I completed my midnight pumping, I went down to the NICU to check in on her. Her heart rate was elevated during that time I was there due to them having to “mess with her” so when I woke up again to pump at 3:00 AM I was able to send Jon down to check on her. When you aren’t staying at the hospital it isn’t the same. I know this day comes for all NICU moms.
So I really didn’t have anything all that new to post, except for my sleep deprived ramblings – but that is probably the best thing we can ask for. This will be a long journey- and as the verses command, we will wait for the Lord.
Rowan got to meet her little sister today and she picked out a monkey rattle for her from the gift shop. She even got to touch her hand- she was pretty excited to finally meet her and she was very curious about all the medical equipment and beeps coming from everything around her. Finley’s stats are holding steady so far which is great.. they are inserting her PICC line as I type this, so I will be returning to the NICU soon to see how that went. Dr Bliss, her surgeon stopped by and said that everything is what we expected it to be, so there are no surprises (yet). If she does well this week, we could be doing the surgery a week from Monday. One thing we really need to happen though is for her to move back down to the other ventilator. The one she is on is a high speed ventilator and is doing more of the work for her, meaning she is requiring more intervention.. She is getting about 28% oxygen (18-21% is what most people require) right now. They can do the surgery on that ventilator, but it is not ideal and they would really prefer her to be on the other one. So we will be praying for that. Dr Bliss did mention we should be prepared for her to decline some over the weekend and then see improvement- many of these CDH babies will go through periods of ups and downs.. I am trying to set my mind around this- but what my mind and heart really wants is that God is going to work his miracles in her and she will just keep getting better. 🙂
Oh, and the other highlight of my day was that I got to change one of Finley’s diapers and check her temperature today! You can see that Finley has a cloth covering her eyes in the photo – she is pretty sensitive to light and stimulation. I have been able to lay my hands on her and I am just so amazed by her – I know the doctors are still very cautious and apprehensive to say she is doing great – she is still a very sick baby in the highest level of NICU support- but knowing how much worse things could be – I think she is doing awesome. I can’t say enough about how all this is all due to God – any strength you think I have – that is ALL HIM. I can’t even begin to explain how I am coping with this so well except for that fact that I feel God’s love and presence with us in this.
Finley shares a birthday with another CDH survivor, Zoe Henry and her mama shared a quote with me that I love that I want to end with…
” Do not look forward to what may happen tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day. Either he will shield you from suffering, or he will give you the unfailing strength to bear it. Be at peace then, put aside all anxious thoughts and imaginations, and say continually, “The Lord is my strength and shield; my heart has trusted in him and I am helped. He is not only with me, but in me and I in him.” Francis de Salle
Also thank you for the comments on the blog, Facebook and texts – your messages of encouragement and prayers have really just fed our spirits. God’s love is evident through all of you.
Liz here again… First off I have to say thank you to everyone for your prayers – I had an amazing delivery (even though it did take some time) and Finley is doing well right now and I am just so thankful for where we are right now. They say to take things in small increments because levels that are good now, need to be different in a hour or more – so we are just taking things as they come, but so far we are very pleased with how well she is doing. Her oxygen levels have been really good from the get go – she has some problems with the first vent they put in because she was trying so hard to breathe on her own she was really fighting it and her heart rate was higher than they wanted to see. Also her blood gas levels were in the “just ok” range. Finally around 4:30 this morning they changed the kind of vent she is on and that has made a HUGE difference. This vent works faster and gives her 90-100 breaths per minute and she seems to like that better – they also put her on a morphine drip that has settled her down. Her blood gas levels actually started being “too good” and the doctor said they were still playing with the numbers, but they were very happy at how ventable (not sure if that was the right word – but hey, I’ve had like 4 hours of sleep) she is. She did really well with the change of vent.
It sounds like Dr Bliss, our surgeon is supposed to drop by this morning, but I don’t think her surgery would be scheduled for any sooner than 1 week – the other doctor said typically they don’t do it any quicker because they really want to get the baby as strong and stable as possible and there is no advantage to doing the surgery quicker.
Oh, and HA! We were right- no problem with her size! 7 pounds, 13 ounces and 21 inches! She has some nice rolls on her already – i will be posting a few pictures soon. It only took 5 pushes to get her out!
Prayer warriors – we will need continued prayer for her to continue to improve and get stronger. We need her chest pressure to continue to decrease as she adjusts to being outside the womb (if it doesn’t – this is where the pulmonary hypertension comes in – and there was also some talk about risks of a collapsed lung), that she gets stronger and more stable each hour and that God is comforting her right now. She is very sensitive to stimulation and light still, which is to be expected. I pray for continued wisdom for the doctors and nursing staff to make the best possible decisions for her care. But most of all – I just praise God for getting us to where we are right now. SO many prayers already have been answered and I am just so thankful for what God has done so far. Even the fact I was able to rest for a few hours last night is huge because I had peace that could only come from one place.