We're home!!!

We're home. I think that says it all. We loaded up on Tuesday afternoon and left Charlottesville with our family of FIVE! It feels so good to be home. Mitchell's new "going home" outfit.
Jake thinks he looks terrified to be leaving the comfort of the hospital...

The new and improved NICU!

We brought Mitchell home with a monitor that he needs when he eats, but since we've been so nervous we keep it on him most of the time. If his Oxygen levels are low, we have a tank that we can use to give him some support.

Precious baby

Day 47

We finally had a second to download some photos that we have taken over the last couple of weeks, while living here in Charlottesville. We are hoping that Tuesday the 21st, Mitchell will be loading into the Minivan and driving home w/ the entire family back to Richmond. They are going to provide us with some monitors and portable O2 to use if needed. However, he seems to need less and less with everyday, and maybe he won't even need it. We will be holding our breath until then, just in case it is another false alarm.

I woke up one morning to find these sleeping arrangements at McD's. So cute! Need I say anything?

He actually has an IV here, in his head of course.


Right after his last tube was removed. Doesn't he look exhausted?

First family photo!

The kids could not take their eyes off Baby Mitchell.

Entertainment at the Ronald McD house.

Sorry it's blurry, but this is how close the beds are. Reesa loves sleeping right next to dad's bed. Jansen has a bed, but seems to get whatever keeps him from yelling...

"The price we paid to become accuainted with God, and with Mitchell,

have been a privilige to pay."

While reading today I found this quote and cannot stop feeling it for our own situation.

Homeward bound!

Yesterday we were told Mitchell was coming home today! Jake in his tender heart spent the morning crying, we were so excited. So we packed everything up, gave away our extra food, checked out of Ronald McDonald House and found out this morning he's not coming home today. He lost 75 grams yesterday, his wound from his heart surgery looks infected and they wanted to start him on IV antiobiotics. We'll be bringing him home with Oxygen so we learned all about it's care today and the new goal is Sunday.

Honestly it is a big blessing. This morning I woke up feeling very uneasy about bringing him home. I started praying that if I was supposed to bring Mitchell home that I would feel good about it, or that I would know how to tell Jake I wasn't ready to bring Mitchell home. I was very worried about him getting dehydrated and having to go to an ER in Richmond with doctors that didn't know his story etc, and spending weeks there. Five minutes later when I went to Mitchell's bed (they had me room in at the hospital the past 2 nights in preparation to bring him home) the doctors already made their decision to keep him and were on their way out. I guess we get prepared for news in all sorts of ways. I felt like this was my way to understand him staying a little longer. AND now I will get a good nights rest because the nurses will be feeding him tonight, not me...

What's it really like?

So I have been living in Charlottesville for two weeks now. Did I say I think this is easy? Well... Jansen got kicked out of preschool. They said he required too much attention, (plus his constant yelling instead of talking, and thinking everything in his site is a ball... which means he throws EVERYTHING probably played a small roll). THEN the first night Jake leaves I take the kids downstairs to do laundry and as I am throwing laundry in the washer (2 minutes???) Jansen is gone! I look everywhere and sure enough I hear the fire alarm going off in the elevator! Jansen is holding down the alarm button, which means the elevator will not open, but also, it's not going up to any other floor. I sit there knocking on the elevator and trying to get his attention so he'll let go of that button. It takes 5 minutes, with me in tears thinking I'm going to have the fire department have to open this elevator before he comes out, ALL smiles. Of course I get a lecture from the landlady about keeping my kids with me! I was so embarassed.

PLUS, I'm pumping every 3 hours which feels like I imagine wearing a dog's shock collar... but only for the first five minutes. I don't shower for the 3 days in a row that Jake is gone, YUCK!!! I can hardly stand it. Does it ever end. Jake told me this is what it means when I say it's hard.

On the brighter side... I found a girl in the ward to watch Jansen for me for a small fee. Chelsey is watching Reesa on Mondays making this an easier day and best of all MITCHELL started to nurse!!!

Mitchell has what they call an Oral-Aversion. Everything that has been put into his mouth for the past 6 weeks of his life have been very painful, so he HATES it. You put anything near his mouth and he starts to cry. Everytime I feed him he thinks it's punishment and does not want to eat. Of course this is so frustrating for me, I have to keep telling Mitchell this is the fun part of being a baby and it will bring him comfort.

Well, today they took out the feeding tube! He does not have anything on his face! That's right, he had 3 successful feeding with nursing we decided to try today with out an NG tube to his belly and weigh him tomorrow to see how he does. This is the last thing Mitchell has to do to come home. Sometimes this takes babies months, or sometimes just a week. I'm hoping he does well.
So I sit at the hospital in the NICU and watch him for when I think he wants to eat, and then I can feed him. It's so weird because if I was at home I would be so happy to have him sleep, but at the hospital, I want him awake so we can try again, so we can go home sooner.

Nursing is also scary because he forgets to breathe, desats and turns blue. I have a monitor to tell me when it's happening, but I'm so nervous to take him home... Apparently it's very sophisticated to suck, swallow, and breathe. We all just take that for granted.

So I feel like such a whinner because this is so hard. I'm trying to stay positive but don't think I do a very good job most of the time. I haven't been able to get on the computer for awhile, and I just started crying to see all the people who care, and have such sweet and supportive comments. The Lord is blessing our family everyday! Thank you so much, I really needed it!

All my love,
Kellie

Miracle baby!!!

Sooooo, Mitchell is a whole new boy since our last post. We have had a very crazy life these past couple of days and haven't been able to update as much as we would have liked. Between me driving back and forth from work in Richmond to the hospital in Charlottesville, and Kellie juggling two very young children who seem to never go to sleep. Getting them to sleep in the same room has been a challenge. Right now, however, Kellie is at the hospital nursing Mitchell for the very first time, and the planets aligned and both of our children are fast asleep upstairs. We bought a baby monitor so we don't have to always be in there.

Mitchell had his surgery on Thursday. He was in a tremendous amt of pain afterwards, and so they had him sedated for a few days after that. They pulled the ventilator, chest tube and IV's on Saturday. Upon pulling the chest tube drain that was left from the surgery, he developed a pneumothorax (air bubble around his lungs). He wasn't able to breathe properly because his lungs couldn't expand to let in that much air. The sedatives they were giving him have a negative side effect of depressing his respiratory drive, thus making him very delicate and vulnerable. He turned blue a total of 6 times over the next couple of hours for 1-2 minutes each time. Every time that happened, Kellie and I very much thought he was going to leave us. They x-rayed him and found out about the pneumothorax, and were able to stick a needle into around his lungs and suck out the bubble. He was also taken off sedatives and narcotic pain killers, and given only tylenol. He deperately needed to be able to breathe, and those drugs were making it very difficult for him, although he still needed them for the pain he was going through.

He was put back on CPAP on Saturday, and improved slowly over the weekend. They started to wean him, and he hasn't looked back. They got him back up to full feeds on Monday, and he has been oxygenating his blood better than ever before, so they decided to step down his support and try out nasal cannula. He has now been on that for almost 24 hours. He is tolerating it beautifully. He seems to have finally realized how nice it is to not have to run a marathon every breath of his life. They are stepping down the support he is getting on the cannula, and will continue to do so slowly until he comes off of it altogether. Right now he is breathing room air, but with a higher flow. We don't know how long it will take him to come off of cannula, but at this pace, that could happen later this week into early next week. He is going to have trouble nursing, as we have been told by everybody, because a baby prefers to eat over breathe. So, they have told us it will at the best take a full 2 weeks before he is able to sustain himself nursing. He may take a couple steps back on his respiratory support in that time.

In the meantime, Kellie and I have been in awe at the power of prayer and healing that have worked for this little boy. We are so very grateful that he appears to be over the hump and that he appears to be on his way home to us. That seems like it would be too scary. However, he is going to live a normal life from that point on, as we are assured with the exception of being prone to respiratory infections, and chronic bronchitis. We can do that. He still loves to be held and will calm right down during that 1 hour period, or 4 hours at best, that he is held each day. Kellie, and I call this our little miracle baby, because it seemed as if his case was medically hopeless just 1-2 weeks ago. Today the doctors were talking to us and prepping us for his discharge, and that is a complete 180 from where he was. They still want to do an MRI, to check to see if he has any central nervous system issues that accounts for his contracted arms. They have to wait until he can go in for 30minutes to an hr w/o any monitors, so that will be still a couple of days away at least. His contractures have improved some, and he is getting his Physical therapy everyday. I don't think it is a problem. He had no room to move around inside mom for who knows how long. He has improved quite a bit, and I don't think he will have any issues throwing a ball through windows along side older brother Jansen.

Mitchell a couple of days after surgery w/ his CPAP mask.

Reesa gets to visit Mitchell all the time at this NICU.

This kid is such an inspiration and a champ!

2 tubes left to go Mitchell, YOU CAN DO IT!

Successful surgery

Mitchell had his PDA surgery today around 2:00 PM. The surgeon called and let us know that everything went very well less than 1 hr later. Mitchell is back up in the NICU, heavily sedated and I'm sure loving every bit of it. He was put back on the ventilator before surgery, so as to have a continuous airway, and they need to leave him on it for a day or two. Sometimes, it takes up to 2-3 weeeks. However, even though I have only briefly talked w/ Kellie since the surgery, I called the NICU, and the nurse said that he is doing really well. If everything stays status qou, then they will try to take the tube out sometime tomorrow. When that happens, we will know more about how his system is really pumping. The preliminary reports are good. I am at home in Richmond, and Kellie is probably trying to put two very over tired kids to bed right now at the Ronald McDonald house. Their computer is pretty slow, but I am sure she will try to keep everybody posted. If not, I'm sure she will have me do it when I can. Thanks for your concern.

We are very appreciative that the Lord has blessed our lives w/ such a miracle baby. We hope his recovery is smooth and he will coming home to us soon.

Jake

UVA

I love you! I love you for reading this blog, for caring about my family, for leaving a comment, for sending us emails, for trying to strengthen us, for praying for Mitchell, for praying for a miracle, for hoping for a miracle for someone besides yourself, for making us feel so lucky that we know you! Our days have been so strengthened by the comments and emails we've gotten. The words you leave us make me feel so empowered to go on, to stay positive, and to rely on the Lord. I cannot tell you how nice it has been to have you support us. It's amazing to me how much we have NEEDED it. Thank you, I love you. We love you.

So Mitchell was transferred to University of Virginia (UVA) Monday. We are so thankful to be here. Jake and I came up here and have been staying at the Ronald McDonald house... for only $15 a night. The doctors and nurses are SO NICE here. I've fallen in love already. They totally let me feel like a parent and a care provider. The visiting hours here are very liberal, and they let us hold him as much as we want. THE BEST PART about all of it... they have a preschool from 9-11:30 and 2-3:30 M-F, followed by free daycare until as late as 8 p.m. for siblings of babies in the NICU. Can you believe that good news? I can have my kids close by and still see Mitchell daily. Jake will stay in Richmond on days he works, and come here the rest of the time. This is probably the biggest blessing I could have hoped for. I no longer have to farm my kids from house to house, and feel like I am imposing on anyone. I am so happy!

It has been a whirlwind of news since we got here. Mitchell had an echo early Tuesday morning, and then maybe 30 different doctors looked at him and consulted with us. He's been examined by neuorology, urology, cardiology, pulmonology, radiology, otolaryngology, and everything short of gynecology!!! The ENT came to examine him to make sure there was not an upper airway problem. (He doesn't cry loud, originally they thought from the ventiltor damage, but the cord was tightly wrapped around his neck during birth and he always arches his back to breathe.) Everything has checked out fine, AND his hypertension, although still there, has improved quite a bit! What this means??? They were able to take him off Nitric and Sildenafil (the drugs that have been keeping him alive for the past month!) He is still requiring high pressure with continuous oxygen through the CPAP and he's exchanging gases perfectly! They don't feel they can improve him anymore until they address the PDA.

The cardiologist agrees that his condition has improved and thinks that this surgery is no longer life-threatening!!!!!! She would like to give him another day to make sure he remains stable. Tomorrow morning they will do another ECHO, and if everything is the same he will have the surgery as early as tomorrow. She thinks this surgery may be the last thing that he needs to transition into this life. His lungs still need to grow and the recovery may be scary, so he'll still be here for another month or so. The fact that he has improved at all is a true MIRACLE!!! He is now a good candidate for the surgery and we are very hopeful this will take care of his problems.

We are going to be fasting for Mitchell and would love for you to join us tomorrow for his surgery or Sunday for his recovery.

Thank you so much for your concern. You have been an integral part in Mitchell's improvement.

Jansen has fallen in love with grandma Sue and insisted on holding her hand the ENTIRE car ride.

Reesa finally got to meet Mitchell before we left the NICU in Richmond. She told us to not cry because Mitchell was going to get better.

Cute baby boy with his new CPAP mask at UVA.