Sunday, September 30, 2012

September 30th, 2012

Blake is still holding strong! He was extubated (taken off the ventilator) on Friday and has been doing pretty well in the vaportherm. I was able to hold him yesterday and again this morning. There is no better feeling than being able to hold your newborn after watching him from the other side of a plastic box for 6 weeks. It is absolutely amazing to be able to snuggle him against my chest while he sleeps peacefully. I love every moment of it! It's definitely therapeutic for me. I leave feeling so much more relaxed, happy and a little more at ease with our situation. And as long as he continues to keep progressing like he has, then I should be able to hold him once every day!

 I have people come up and tell me all the time that they follow Blake's progress on this blog. And to be honest, it makes me a little shy and nervous! I've never really shared my thoughts with people. But it overall makes me feel grateful. Grateful that so many people care and love Blake and our family. We have such an amazing support system. We are truly lucky. Blake is one remarkable little man and I know that we have all your prayers and kind hearts to thank. I've said this a few times before, but I truly think God hears all your prayers and is answering them. Blake went from having 50% chance at even surviving outside the womb, fighting through a potentially deadly perforation in his bowel, having a drain inserted into his belly and being put under to endure a surgery on his intestines, and fighting off pneumonia to finally being stable and healthy for the most part. He's active and lively. He is breathing on his own and isn't connected to a single IV. After all those obstacles he's still staying strong. I'm able to hold him and we are finally able to take a breath and enjoy his progress and development.

 I wouldn't doubt if we hit a few more speed bumps before this hospital journey is over but I am so thankful for all the good moments like these. My shoulders feel a little lighter when we have good news and I don't feel like I'm too overwhelmed. Blake is such an amazing little boy and I can't wait to finally be able to bring him home. Thank you again for keeping him in mind.

                                                                Kangaroo care 9/30

Snuggling with mama

Love moments like this

Thursday, September 27, 2012

quick update

Quick update! Blake was all the way down to 21% oxygen on the jet ventilator so they took him off of it and put him back on the original ventilator. He was at 40% oxygen with the new one because they wanted to make sure he settled in nicely and after his blood gas they weaned him down a few percent. The doc said that he will be off the ventilator in the next day or so all depending on what Blake wants to do. So he didn't get off like we thought he would but he's still doing really good!

Wednesday, September 26, 2012

6 Weeks and Good News!

Today Blake reached the 6 week milestone! We were greeted with amazing news today as well. I'm not going to say the pneumonia is 100% gone until I talk to Blake's doctor but the nurse DID say that the doctor's think the pneumonia is pretty much all cleared up!! Very exciting news for us. She told us that his chest xrays looked great and showed very little traces of the pneumonia if any at all. We were at a stand still last week so his improvement this week definitely feels like a huge blessing.

Other good news is that Blake should be off the ventilator tomorrow. He was doing really well with his oxygen today. When I walked in he was at 50% and by the time we left he had weaned all the way down to 35% and was very stable at that percentage. With the pneumonia cleared from his lungs, Blake is able to oxygenate a lot better which shows in the numbers on the ventilator. He's still on the High Frequency Jet Ventilator but he should be weaned off tomorrow. He will be on something called a vaportherm. It is just a nasal cannula that is heated and humidified which helps him tolerate higher flows without the complications that a regular nasal cannula can have. I am very excited that he will be off the jet ventilator because it means I can finally start holding him a on a regular basis!

More good news, Blake will be on full feeds of breast milk tomorrow as well! He has been getting continuous feeds for the last week or so and they have been increasing it daily. Tomorrow he reaches his max hourly intake of 7cc. The nutrition IV that gives him the TPN Lipids will no longer be needed. The nurses will be putting a few more calories in my milk to help him gain more weight.

Speaking of weight, Mr. Blake weighed 2 pounds 12 ounces last night! That is an unfair number though since he had a blood transfusion yesterday and probably gained a few ounces from the blood he received. However, before the transfusion he weighed 2 pounds 8 ounces which means he has at least gained a pound since birth!

He was so alert today! I loved it. You can definitely tell that he has more energy now that he's feeling better. His little eyes were wide and looking around, he was sucking on his pacifier and wiggling around in his bed during his Cares. Seeing him so aware and awake made my day! You can see his progress just from his behavior which is fantastic and definitely puts a smile on my face. And his little cheeks!! Oh how adorable they are. I think it is so cute that his little tiny body has such healthy looking cheeks! I just love them!

I can't even put into words how ecstatic I am about today's progress. I was smiling from ear to ear today after receiving all the wonderful news. He really is a little miracle and we are extremely blessed to have him be doing so well. He has been given quite a few hurdles to jump over but he just keeps on keeping on!

Winking at us

Wiggling that arm!

Posing with mama and daddy

Love his chunky cheeks!

Thursday, September 20, 2012

September 20th, 2012

Today was a little disappointing. Blake is at a stand still with trying to recover from the pneumonia he has. I've been kind of behind with his blog updates so I'm sorry if I repeat some things.
After they diagnosed him with pneumonia they started him on a cycle of antibiotics in hopes that it clears it up. The first initial xray showed a good amount of secretions in his lungs. A day or two after the antibiotics started, the xray showed that it was starting to clear up. Not a whole lot but you could see a difference.
And here we are today, 5 days after he was diagnosed and there still isn't much change. He isn't getting worse but he doesn't appear to be getting better. His oxygen is still on the high side. He's been bouncing from 60-75%. We only breath 21% so blake is definitely getting a lot more oxygen then you and I need.
He was put on a different ventilator yesterday. It's called a high frequency (jet)ventilator. It is supposed to help relieve some of the irritation of the lungs by keeping them open with a ton of short breaths rather than opening and closing his lungs with each breath like it did on the other ventilator. The quick short breaths cause his body to shake a bit. I hate having to see his little body vibrate from the machine but I'm hoping its worth it in the end.
The doctor explained whats going on in Blake's lungs and this is what I got from it (I'm hoping I say this right, it makes sense in my head so I hope I can relay it correctly). Blake has some parts of his lungs that are collapsed and some that are open. I don't know what the ratio of open to collapsed would be but I'm pretty sure the majority are open. Well, since there is some collapsed and closed off, that part of his lung isn't oxygenating properly and that's why he is needing more oxygen from the vent. We are hoping that the jet ventilator helps open up some of those closed areas by applying equal pressure since its a steady flow of air in and out at the same time, which is what keeps his lungs open. I hope that makes sense.
Having a baby in the nicu is by far the hardest thing I have ever had to endure. As a mother, my natural instinct is to want to hold, love and care for my baby. Seeing him connected to all the machines and wires scares me. I'm afraid to touch my child let alone hold him. I kissed his little cheeks for the first time the other day. I had no idea I was allowed to so I never did even though I wanted to. Every time the nurses or doctors get in with Blake to change him or care for him, they have rubber gloves on. So of course I think they want to make sure everything is sterile. The last thing I want to do is hurt my baby by kissing him and giving him the germs that they are trying to prevent. But the other day, I was helping with the Cares and right before we were closing up his bed his nurse looks at me and says "you can give him a kiss if you want." I looked at her confused and said "really? I'm allowed to do that?" She just smiled and told me "of course! He's your baby. Go ahead and give him a kiss!". She didn't have to tell me twice. I was so happy to be able to show him some sort of affection. I actually felt like a mom to him. Too often I'm stuck sitting on the sidelines while I watch strangers care for my baby because I don't know how to. I hate feeling so useless and helpless. It's awful. The only thing I can do is sit by his side and hold his hand, or cup my hand over his little body to cradle him. So being able to kiss his little cheek meant the world to me! It's the simple things like a peck on the cheek that make all the difference. I love him so much and I want him to know that.
Blake is a fighter. All the nurses just absolutely love him and I know they are doing their best. I'm praying that this pneumonia packs its bags and heads out in the next few days. Even though we haven't had much progress I have to remind myself to stay optimistic and just take it one day at a time.

Saturday, September 15, 2012

September 15th, 2012

These little bumps in the road are becoming more and more frequent it seems. Blake has been desatting (decrease in oxygen saturation in his haemoglobin) quite a bit and has been needing more oxygen. For a baby who was successfully weaned off the ventilator, this is odd. Even with his surgery being over a week ago, his oxygen numbers have stayed pretty high.

He had an echocardiogram done yesterday to see if maybe that blood vessel in his heart was wide open and may be the reason for the all the breathing issues. The results showed that vessel was not wide at all and would not be causing issues. So the next step was to order up an ultra sound for his belly and chest. His belly looked great. No blockages or anything to worry about there but his chest did look a little hazy which makes sense because they have been suctioning out quite a bit of foggy secreations from his lungs. There has been some speculation that he may have pneumonia so they put him on another antibiotic yesterday and will continue that for a full cycle.

Last night his oxygen levels got extremely high. They tried a different type of ventilation but he didn't seem to like it and went back to the one he was originally on. Now that he's had these issues continue and get worse, they now pretty much know its pneumonia.

He was given another dose of surfactant this morning which helps open up those air ways and capillaries and it prevents fluid accumulation so it keeps the airways dry. The surfactant seems to have helped quite a bit. They were able to lower his oxygen levels from 100 to 75. 75 is still extremely high but he is slowly coming down. Ideally, we'd like him to get to at least 20-30.

It just seems like once we conquer one issue, another arises. Pneumonia is scary but they seemed to have caught it early on. The antibiotics should start taking effect in the next day or so. Patrick and I are with him right now and his vitals are really good and he seems content. If they can keep weaning the ventilator to a smaller oxygen percentage then we should be okay. The fact that he's done so well since the dose of surfactant is a good sign. We just have to wait and let the antibiotics work their magic. I don't think I've ever appreciated all the medical technology that we have until now. It's amazing what they have for these little tiny premature babies. I'm learning more about the body, its functions and medicine here in the last few weeks of being in the hospital with Blake than I ever did in school. 

So please continue to keep our little Blake in your prayers. He is pushing through and being so strong. I keep hoping that he's done with all these obstacles but he keeps getting put to the test. He's such a little trooper and I  believe the prayers are being heard so please keep them coming.

Thursday, September 13, 2012


Sucking on his little fingers

You can see his ostomy bag tucked into his diaper
Ashton kissing a picture of his little brother

His poor little mouth with his ventilator tube and his feeding tube

Holding mama's hand

You can see the bruise and bump on his head from when the blood transfusion infiltrated into the tissue. Poor baby.

29 days old

Waving at the camera!

"No more pictures mama!"

Cuddling with mama for the second time at 29 days old

Enjoying Kangaroo Care whenever we can get the opportunity

Sept. 13th, 2012

Good news! Blake started feedings Tuesday. They are starting with a very small amount. He's only getting two cc's every 6 hours but its enough to see how his belly takes food. And from the looks of it so far, he's been taking the feedings pretty well.

The nurses adjusted his breathing tube. He has been having some issues with the ventilator and they didn't know why so they did an xray to see what may be going on. Sure enough his breathing tube was a little high. After some adjusting, his numbers stayed more stable.

He's still doing really well. A few tweaks and adjustments here and there but nothing abnormal or vital.

I did have a little mishap with Blake's bedside nurse yesterday that I wasn't too thrilled about. It was a nurse we have never had before and she just didn't seem very friendly off the bat. She really only spoke to me when I asked a question and that was about it. Well, what had happened was she stepped out and was in a room with another baby. Blake's bedside alarm went off and another nurse came in to check on him. By the time his nurse came back, she was real snooty like she was annoyed that the other nurse came in. The other one apologized and said "i didnt mean to get under your feet" and instead of smiling or being friendly, she just rolled her eyes at her. That was my first clue that she wasn't quite as nice as all the other nurses we've had. They both left the room and a bit later his alarm went off again. The not-so-friendly nurse came back in the room and as she opened the door she says "Jesus Christ!" As if she was frustrated or annoyed. I was shocked. She didn't even turn to apologize for what she said. I felt a little irritated because here I am, a mother who has to trust these people to take care of my child because I can't and then she goes and comes in all flustered like my son is inconveniencing her. Needless to say, I spoke with the floor manager and asked that we do not get this nurse again. I'm sorry but I shouldnt have to deal with a professional who has an attitude. It's uncalled for. After being reprimanded, she later came in and apologized. I'm a forgiving person but I just don't think I can get over her distasteful words. I don't want someone who openly shows her frustrations at work caring for my child.

Other than that, we had a pretty uneventful day. Besides the beast of a nurse I dealt with yesterday, all the staff at Thunderbird have been beyond amazing. I just hope that's the only issue that arises with the staff.

Monday, September 10, 2012

Sept. 10th, 2012

Blake reached 2 pounds today! He is slowly but surely getting bigger. That's the big news of the day.

I haven't written anything since the surgery because to be honest, I wasn't quite sure what to write. I knew he was stable, I knew he was getting pain meds and I knew he was recovering. But other than that, all the small details I picked up when the doctor's talk in their lingo weren't anything of major importance. Adjusting his ventilator here and there or doing basic labs and blood tests. Nothing too crazy.

He did hit a little bump (literally) the other day though. Nothing life threatening or vital, just figuratively a little bump but physically a big bump. The other night they needed to give him a blood transfusion. But my poor buddy had IVs, wires or tubes from every limb and the only place they could get to for the transfusion was in his scalp. Well, the blood infiltrated into his tissue which resulted in a HUGE bump on his scalp. The night nurse called me in the morning to give me a heads up and not worry when I came in the next day. But even with the warning I was still shocked. I was thinking it would be a little blood blister. I was not expecting a bump half the size of his little head. They said its common when doing an IV or blood transfusion in that spot. It may take a few weeks for the swelling to go down. His body will naturally break down the blood in the tissue and all will be well. In fact, the swelling has gone down quite a bit. The doctor told me it would heal like a bruise. It's kind of purple in color and will probably go through the yellow and blue phases before it goes away completely. So even though it looks pretty bad, it really isn't. A little knot on his head is the least of our worries.

I asked the doctor about what the timeline looks like for when they will put his stoma (intestines) back inside his belly. He said we need to wait at least 6 weeks. And if all is going well and he is getting his nutrients from my breast milk then they will wait as long as they can so that he can get bigger. If he has problems or isn't getting the nutrients he needs, then they will put it back to together sooner. Sounds backwards right? Well, the reason for this is because only the intestines above the stoma are able to digest the nutrients. Luckily, his stoma is low so he has the majority of his intestines to work with in the meantime. If he wasn't absorbing enough nutrients, they would want to put the intestines back together so he can use all his intestines and have a better chance at absorbing what he needs. Sorry if that doesn't make sense or is confusing. The doctors always explain things so easily and when I go back to repeat them, I make a mess of the explanation. It makes sense in my head but its always harder for me to actually voice it.

Overall, Blake is doing just what he needs to be doing. Resting and recovering. No news is always good news in my eyes.

Wednesday, September 5, 2012

Surgery Day

I've been thinking about how I was going to write this post all day. How could I possibly explain what happened today. All the medical mumbo jumbo. All the emotions and worries. All the fears and stress. Today was rough, but Blake is doing really well.

Today Blake had his surgery to correct his perforated bowel. Patrick and I arrived way before he was taken in. I was able to help with his Cares before the surgery. He was awake, kicking and as feisty as ever. Once the diaper change and all the rest of the poking and prodding was over, I was able to cradle him with my hands to calm him down. I sang to him quietly the song I've always sang to him and Ashton, Boats and Birds by Gregory and the Hawk. His heart rate relaxed and was steady in the 150's. His eyes closed and he looked oh so relaxed.

"If you be my star
I'll be your sky
you can hide underneath me and come out at night
When I turn jet black and you show off your light
I live to let you shine I live to let you shine..."

He held the tip of my finger with his tiny hands and would squeeze and grip it occasionally. We had only about 20 minutes to relax this way before all the nurses started coming in and out. Banging this and that. Talking loudly compared to the whispers of my voice. Bedside alarms going off as they were figuring out how to disconnect this and reconnect that. I looked up at the monitor and his little heart rate would jump up from his peaceful 150 to 170. His body would flinch and his tiny facial features would scrunch up as he grimaced. The nurses would leave, he'd calm down and start to relax and it would start all over again with the chaos of nurses.

All of a sudden there was a flood of people standing outside the door of his room. Bedside nurses, O.R. nurses, nurse practioners, respiratory therapists, anesthesiologists, neonatal specialists and so on all talking numbers, stats, and all their different medical codes. I stepped back from Blake to let them have room and give them space to get what they needed done and before I knew it, he was being wheeled out of the room towards the operating room.

I tried my hardest not to cry. Patrick kept asking me if I was okay but I couldn't speak because I knew I'd break down more than I was already. The thought of my tiny baby going under the knife scared me to death. Not only did I fear the surgery, I feared the recovery. I was so worried that he would be in pain. How can a tiny baby voice that he's not okay. That he hurts and is uncomfortable. Only his vitals can show that. And the fact that his heart rate jumped from just the commotion in the room made me wonder how he could even handle the aftermath of surgery. We waited for what seemed like forever. Sitting in his NICU room without him was eery. I didn't like it. I just wanted him back in his room safe and sound.

Finally, the surgeon appeared at the door and gave us a smile. He came in and was followed by the camaraderie of nurses and therapists. He sat on the couch with us and gave us the news we have been waiting for. We would finally have answers.

And I will try to explain what they found but we were thrown quite a bit of information so bear with me while I try to relay it back. The surgeon went in not knowing what he would find. All we knew was Blake was still draining fluid even though the drain was removed so at the least he needed to go in and correct that. What he found was that quite a bit of Blake's instestines were infected but had mostly healed. There were a few weak spots so he went ahead and stitched them up to prevent future leaks. He wasn't able to sew up the larger hole because the intestine wasn't strong enough so he brought both ends to the surface of his skin which is called an ostomy and the intestines themselves is called a stoma. Tomorrow they will put a bag over the stoma and that is where he will pass his bowel movements from for at least 6 weeks. Once he gets the okay from the surgeon in 6+ weeks, they will sew up the stoma and put it back in his belly.

Sounds scary. The good news to all of this is that the upper intestines are healthy and will be able absorb the nutrients from my breast milk when he resumes feedings in 4-5 days. Also, he still has more than 90% of his intestines. They only removed 5cm of dead intestines. The rest was healthy. People can live a normal life with as little 50% so the fact that he has pretty much all of his means we won't have any issues in the future once the stoma is placed back in his belly.

My poor baby had to endure a major surgery but at least the problem was solved and we can finally stop playing the guessing game.

Blake was finally brought back into the room. It took just as many people to put him back as it did to take him out. The nurse practitioner called me over and asked me if I wanted to see what was done. I just nodded. The morning was so overwhelming I felt as if I lost my words. She led me over and pulled down his little diaper to show me the stoma. Two little reddish colored tubes stuck out from the area where his drain had been. It wasn't as bad as I imagined it would be. Except my poor Blake was still sedated and knocked out. We were asked to step out for a few minutes while some xrays were done.

When we came back in, Blake's eyes were wide open. He was awake, but he was so medicated that he was just zoned out. Unmoving. His eyes held only a blank stare. He didn't even blink. It was the widest I'd ever seen his eyes open. I broke down. Even though they told me he was comfortable and felt no pain, it scared me to see him that way. All I wanted was to kiss him and cuddle him. Let him know that mama was there. The nurse said I could reach in and place my hand on him. So I did. And I hummed him his little song while he just stared off. I hated seeing him that way but I know that if he wouldn't have gotten the surgery, he would only have gotten worse.

I thank you ALL for the prayers. I think I say that in every post but I truly mean it. This situation could have been so much worse and I honestly believe that all the prayers are being answered. I believe that Blake is in God's hands. This surgery proved how strong Blake is. He is our little miracle child. Keep the prayers coming his way because even though we appear to have gotten over the hump, we still have quite a ways to go.

Tuesday, September 4, 2012

Sept. 4th, 2012

Patrick and I usually retire to bed soon after Ashton goes down at 8. Yes, we are like an old married couple. Especially now. We've been exhausted. Having two kids under separate roofs keeps us on our feet and running around all day. So yeah, by 8 or 9 o'clock we are ready to head to bed and watch TV until we fall asleep. But not tonight. We are both wide awake because we are nervously awaiting Blake's surgery in the morning.

Tomorrow is a monumental day for Blake because we will finally have answers as to what's going on in his tiny belly. It's been a guessing game since his fifth day of birth when the perforated bowel was discovered. And with answers comes a solution. Once the surgeon can take a look inside, he will know how to fix the problem.

I explained in a previous post what the surgery entails. To sum it up in short, if the intestines are healthy then the surgeon can go ahead and stitch up the hole and we'll be done with surgery. But if the intestines aren't too great and aren't strong enough to withstand being stitched together, then he'll have to pull both ends to the surface for the time being.

Patrick and I are stressing and worrying. We know its necessary but its still a scary situation. We've been up painting his room, trying to occupy our minds and keep busy so we don't dwell on the unknowns. We are glad that we will know what's actually going on on his belly. The guessing game gets tiring so we are definitely looking forward to answers. I just wish there were other means to get those answers.

Please keep Blake in your prayers. I know I sound like a broken record but I truly think God is hearing all the prayers. Blake is strong and there's no doubt in my mind that God is helping him. So please keep the prayers headed his way.

Monday, September 3, 2012

The last few weeks I've been contacted by so many people. People wishing us luck, giving us prayers and blessings, or simply just sharing their stories to let us know that we aren't alone. It's been absolutely amazing to know that people care and are cheering on Blake to get better, grow and thrive.
I guess the point I'm trying to make is that with all these heartwarming messages of support I've been told that I'm 'strong', and 'inspiring' which to be completely honest confuses me because I definitely do not feel like either of those things. I'm simply doing what any mother would do in my case. Obviously no one asks to be in this scary situation and trust me, I am more than flattered to have such amazing words said about me but I just don't understand how people see me as strong because I certainly do not feel that way.

When they confirmed that my water was ruptured, I cried. I didn't just cry, I sobbed hysterically. I thought that since my water broke I had to go ahead and deliver. I had no idea that they could keep me pregnant awhile longer. I was scared for my baby's life. I was a mess. That first day in the hospital I cried about 100 times. But I noticed the more I cried, the more my belly would contract. So as much as I wanted to just let it all out, I dried up my tears and tried to keep myself calm.

I purposely asked that Ashton not be taken to see me because I got so emotional about seeing him. I missed him and it tore me up to even speak about him let alone see him in person. I only saw him a few times because I knew my body couldn't handle the emotions. The last time he was brought in to see me, I couldn't hold it in anymore. I cried like crazy once again when he left. But I knew I couldn't let myself get out of hand so I again, tried to suck it up.

That first week in the hospital was miserable. All I wanted to do was cry and let my emotions out. That's how I cope. And I couldn't. I physically couldn't because I didn't want to start up my contractions again.

Even after Blake was born. I cried only when I saw him. It was so hard to see him behind the plastic where I couldnt touch him or comfort him. Connected to wires, tubes and machines. Not knowing whether or not he was strong enough to make it. It was all too surreal. Knowing that my body couldn't take care of him anymore and I had to trust and let these strangers do it for me killed me. You never have privacy in the hospital. So I still couldn't cry. Every now and then I would slip a few tears but as soon as I did, a nurse or family memeber would come in my room and I'd just have to say "I'm okay" when in reality, I just wanted to curl up in a ball and ball my eyes out until I ran out of tears.

This is why I feel confused when I am being called strong. I'm an emotional wreck. I may not show it and make it obvious, but behind closed doors is when I can finally break down and actually process the day. Process the reality of our situation. I never thought this could happen to us and our family. I was never taught how to cope with something like this but I don't think anyone is.

Handling life with a child in the NICU is challenging to say the least. Its constant guilt. Guilt that I only spend a few hours a day with Blake. Guilt that I don't spend more time with Ashton. Guilt when I'm happy or enjoying something. Guilt that I can't do more. I constantly feel guilty because my poor baby is sitting in the hospital by himself while I try to carry on with the rest of our day to day activities. I know that I can't put my life on hold because Blake isn't under our roof but its just hard to accept that I can't do more.

Each day gets a little easier. Each day is another milestone for Blake and one less day until he is home with his family. Now that its been a little more than 2 weeks I am finally getting into this new routine. It's still difficult but we manage. I know that there's not much I can do in this situation except to carry on through it and to keep praying for precious little baby. He truly is a miracle. He's definitely taught me more about life than I ever knew before.

If anyone in this whole ordeal is strong, its my little Blake. He has beat the odds thrown his way and proved the doctors wrong from the beginning. And if I am indeed strong, then its all because of him. He keeps me going. My family is the most important thing I have and even though Blake has only been here for a little more than 2 weeks, he has shown me what life is really about. He's shown me that the little things I used to obsess and stress over really aren't that big of a deal. He's shown me that there are thousands of things that I take for granted and need to be thankful for. He's shown me that life is precious. He's a fighter and I'm only strong because he's strong. He has the will to be here and progress. And if my little 1 pound 8 ounce baby can fight and push through this, then I know I can too.

Sept. 3rd, 2012

Blake is back on the ventilator. He was having a hard time keeping up breathing on his own. The nurse practitioner used the analogy of someone running in a marathon. Those who aren't conditioned for it can start off doing really well but will eventually tire out and slow down. That's how blake is. He started off really well but his lungs just aren't developed to where he needs to be in order to do it on his own. Blake is physically exhausted from trying. He is actually very content on the ventilator and is currently knocked out and sleeping. Poor guy. At least the ventilator gives him a break.

The scary thing we knew we'd have to face eventually is the aftermath of the Penrose drain. They think that a fistula was made by the drain. A fistula, in this case, is a pathway from the outer skin to the bowel that  was caused by the drain. So even the though the drain was removed, he is still getting drainage through the hole in his abdomen. The surgeon wants to go ahead and schedule Blake for surgery on Wednesday. He wants to go in and close up the fistula but while he's in there he wants to go ahead do one of two things depending on what he finds. Opition #1, if he's able to, he wants to go ahead and just stitch up the tear in his bowel. However, this all depends on what the bowel looks like. If it isn't in good condition, he may have to do option #2 which would be to pull both ends of the damaged intestines out and have them in a bag on his belly. His bowel movements would then have to be emptied from the bag until he was big enough (at least 2000 grams) to have them stitched up and placed back inside of his belly.

Patrick and I are going up to the hospital tomorrow morning to discuss the surgery further with the surgeon, but it does look like we are looking to have the procedure.done Wednesday.

Surgery in general scares me. I was a nervous wreck about having to get a c section which is such a basic and common procedure. And now I'm sitting here scared death for my little baby to have his surgery. I know its necessary but it still makes me feel awful. I wish he didn't have to go through all this. I know that its been nearly 3 weeks since I had my c section and I'm still sore and stiff in the mornings. I can't imagine how my Blake will feel while he's recovering. I can only pray that he recovers quickly so that we can get passed this rough patch. I know I'll be an emotional wreck while he's in surgery.

Hopefully after this surgery we will be done with this traumatic and stressful issue. Besides the perf in his belly, Blake is still hanging strong! Hopefully this will be the last scary low on our NICU roller coaster. We are praying that the rest of his stay in the hospital consists of him just growing and developing so that he can come home with his family where he belongs.

Saturday, September 1, 2012

September 1st

Just got off the phone with Blake's doctor. The plan to start feedings again this weekend has changed. The nurse told us this morning that he was still having drainage making its way out of the hole where the Penrose drain was. They aren't quite sure if the drainage is left over from the initial tear or if the perf in his bowel is still there.

The new plan is for him to get another set of xrays done tomorrow to see what's going on in his belly. Depending on what they see, they may go ahead and do a dye test where they put dye in his feeding tube to see how it goes through his system. Hopefully with these tests we'll have a better idea about what's going on in his belly.

Other news is that they replaced the nasal cannulas with an oxygen mask type thing. The cannula was working but Blake opens his mouth which allows the pressure of the air to seep out instead of keeping the pressure in his lungs when he needs the assistance with breathing. It's a little set back but its not a major thing. Once he is strong enough to breath on his own again they will put the cannula back in.

With all the great news we've had lately, its easy to think that it will be a smooth road from here on out. They told us there would be bumps in the road. We just have to remind ourselves of that from time to time. Even with these few little bumps, Blake appears to be improving and staying stable in all his labs, tests and vitals (besides the desat. which is why they gave him the oxygen mask thing). We still have a long road to go down before he can come home so we just have to keep hanging in there!