Medical update- day 5

We just finished rounding with the docs for the night and have a clear picture of Janes status for the day. Sometimes there are so many people in her room and so many procedures going on that we get lost in the shuffle of things. Here it goes: Jane has not had any great improvements today, however she has not back tracked either. Her oxygen sats continue to stay steady with a few “spells” throughout the day. The spells, as they call them, are periods when the oxygen saturation in Jane’s body decreases. It usually takes about an hour or two for her to fully recover. Her spells have drastically decreased, though, from a few days ago. Currently, Jane is on 2 medications that are helping to reduce the workload of her heart. One of the meds reduces the pressure in her lungs while the other reduces the pressure throughout her body. The neonatologist told us that there is a very delicate balance between these two medications but the goal is to reduce the workload of her heart so that it can begin to work more efficiently. Jane was also given her first blood transfusion today because her RBC count came back low. Blood was given so that her heart could be more efficient at oxygenating the body. Every time a healthy individual gives blood it takes several weeks to replenish blood that is made in the bone marrow. This is also the case with Jane but the docs don’t want to risk having to wait for her to make more blood or put more stress on the heart to supply more oxygen to the body. (the reason Jane is losing blood, per se, is because of the daily labs that they do. Might as well replenish!)

Scary things of the day: 1) the nurses were trying to place an IV so they could give her blood. They poked her 3 times and failed; 2 of those times were in her poor little head. I just stood by as I watched them stick a needle in her head, yuck! 2) The unit wanted to move her to another unit again today because the nicu is full. Daniel and I sort of threw a fit… I mean, what next? Are they going to put her in the lobby when that unit gets full?? They decided to keep her put!

Best parts of the day: 1) I got to change her diaper THREE times and take her temp. It was a dream come true!! Ok- I know, I know..,it’s only a diaper but I’ll take that any day!! 2) Jane tried so hard to open her eyes to look at Papa. He was right there talking to her and she just couldn’t quite muzzle up the strength. It’s hard for her since she is so tired all the time. 3) Daniel found out he is a perfect match for her blood!!!!!! B+, CMV- (but we’ll still take a few more donors) 4) Jane had more visitors today and had a great time with them all. Her great uncle Sam told her she needs to get up and go to work already. And that my friends, is the Kosareff in them all!! Haha

I still long to hold her in my arms, but we’re taking one day at a time. Thank you again from the very bottom of our hearts for your prayers, love and support in ALL the different ways yous are showing it. Sorry if we are not responding to all our messages, texts, voicemails, emails.., we are receiving them with TEARS!!!

***i must say my anatomy and physiology education sure is coming in handy. :)

I leave these words with yous all as words of a blessing:

31 “When the Son of Man comes in His glory, and all the holy angels with Him, then He will sit on the throne of His glory.32 All the nations will be gathered before Him, and He will separate them one from another, as a shepherd divides his sheep from the goats. 33 And He will set the sheep on His right hand, but the goats on the left. 34 Then the King will say to those on His right hand, ‘Come, you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world:35 for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took Me in; 36 was naked and you clothed Me; I was sick and you visited Me; I was in prison and you came to Me.’ 37 “Then the righteous will answer Him, saying, ‘Lord, when did we see You hungry and feeyou or thirsty and give You drink? 38 When did we see You a stranger and take you in, or naked and clothe you?39 Or when did we see You sick, or in prison, and come to You?’ 40 And the King will answer and say to them, ‘Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me.’

January 25

Jane’s condition continues to be slow and steady (like the tortoise and the hare-the tortoise wins the race…) The doctors have started to discuss weaning Jane off some of the medications she is on. This will be a VERY slow process to see how she begins to react to various stimuli and if she will hold up on her own. So far so good, although they have only begun and the changes have been minimal. We will begin to see changes (good or bad) when the weaning is significant enough. We still havent heard anything from the team of doctors that met today to discuss Jane’s condition. It is likely that no definite plans were made since we are still early in the game and there is much they want to see happen before talk of surgery. The meeting was more of a brainstorming session for all the big shots to throw around their ideas and fight over whos idea is best. :)

Tonight we have the best nurse….she called Jane her baby away from home. :) She recommended that we set up our own conference with the surgeons and cardiac team to discuss our options. She said she feels that after a week of having no plan she fully supports us meeting with the team to get some idea of what their thoughts are. Are they looking for certain numbers or specific changes to occur, are they still considering surgery or have they taken that off the table?? We have no idea! It’s been nothing but a waiting game and although Jane is worth every minute…it would be settling to hear something concrete. So, for the time being, we continue to wait and enjoy every moment with her despite sitting at the hospital. I asked our nurse tonight how long we can anticipate being here and she couldnt say for sure but she did say that we have a long road ahead of us. She also gave me a different way to look at it; she said whether or not we were able to take Jane home right away I would be sitting at home for several weeks anyway so instead of sitting at home I am sitting at the hospital and giving myself the time I need to recover from my own surgery. That was a fresh way to look at it because I know if I was at home I would totally be over doing myself and forget that I just had a major surgery!

Daniel and I continue to be over joyed with the support we are receiving. Jane is loved by so many people; she is so lucky!! (and I am blessed to have a daughter who has made such an impact on people’s lives after only a week of being born- already she has changed me for the better).

A New Day

Much hasnt changed from yesterday. Jane continues to show signs of stability as her medication is weaned (and replaced with other meds). Oh yeah, so heres a funny one…Jane is taking Viagra!!!! I had to laugh when the nurse told me what it was. Oh this girl, experiencing so much at such a young age! LOL!

I had a nice, long discussion with Beverly, the nurse in charge today. I asked her why they havent done surgery and what EXACTLY it is that the Drs are looking for. She said overall they are hoping and waiting for more forward blood flow through the pulmonary artery to the lungs. All the med changes, oxygen adjustments, nutrition changes, etc. are constantly being manipulated to try and increase that flow and allow Jane, on her own, to do this. IF, I repeat, IF that happens then we can try and avoid surgery all together or for a great length of time until she is older. That is why it has been a waiting game. My next question was- how long will we be here? She looked at me sincerely and said probably at least until Easter or longer…and my heart dropped. But then she reminded me that Jane is mine forever, we have a long road ahead of living in the medical world, and we need to do all that we can now. So, I picked my heart back up and decided it was time to prepare myself mentally. She said she hopes I can laugh in her face when she is proven wrong, but we need to be realisitic. The next big question was when can I hold her?? She told me probably next week sometime we can re-evaluate and look into making that happen for me. She realizes how important it is to me to hold her, but as they wean her from her medications she needs to prove her stability. Beverly said that people with heart failure can plummet at anytime so we want to be sure that she candle handle the move before taking the risk.

Daniel and I continue to enjoy each and every moment with her…one day at a time.

***Beverly told us that Jane’s case has been sent to Stanford for a second opinion.

Our Unfailing God

Well….if I can be so honest to say that these last few days I have been dwindling down and feeling so broken, so weak. It definitely didnt help when the staff began to wean Jane off of one her meds and it failed because she was not ready for it. I was sooooo hoping that all of these steps would continue to lead in a positive direction. So, as I walked through the NICU doors this morning with my head hung low I ran into our social worker, Dana. She stopped me to ask how I was doing…she noticed the look I had on my face and said, “I will be in your room shortly.” After a nice chat with her and taking a few moments to breathe, I soon realized that God has not let me down and is not about to. TODAY he sent me Dana to listen to me and allow me to freely express my concerns.  I also saw today that many of your prayers have been for renewed strength and peace. God couldnt have timed it more perfectly!

As for Jane, she is just hanging out. The first weaning wasnt successful, but the respiratory therapist said that is ok. They will try again. The cardiologist reminded me that every baby is different; for some it only takes one time and for others it takes 3 weeks to reduce pulmonary pressure (which is what the weaning process is all about). He also told us that they are still waiting to hear back from Stanford about their opionion. Apparently, Stanford has a little more experience working with smaller babies that have Ebsteins. Either way, we are in good hands.

A Safe Arrival

Jane arrived to Lucille Packard Childrens Hospital at Stanford last night around 11pm. We waited anxiously to greet her. After the team got her all settled we talked to Dr. Shin, one of the cardiologists who told us they have her scheduled for surgery on Tuesday morning. They are going to review her case this morning, look at her heart ultrasounds, and come up with a plan.

We wait…just a little longer…

A few of you have asked for an address for us… Our social worker is looking into accomodations for us while we wait for Ronnie Mac to open up. As soon as that is finalized I will post a mailing address.