Almost Homeward Bound

Ever since Eli started nasal cannula he has been progressing very quickly! Here are the big milestones he's achieved in the past 2 weeks:

Breastfeeding - Eli can breastfeed like a champ! He has always loved his pacifier and that seemed to help him transition well into breastfeeding. Since it's hard to know exactly how much he's eating, the nurses weigh him before and after he eats. The first time we weighed him he took in 90mL! That's a lot of milk for him because he is usually tube fed 63mL every 3 hours. We thought it was a fluke so we tried again the next day and he took 70mL! We are so happy that he can successfully breastfeed. Almost all premature babies are unable to get enough volume from the breast because they have to work so hard to get it. It doesn't seem to be a problem for Eli! He does, however, have a harder time taking milk from a bottle. The occupational therapists have been trying to find a bottle with a flow that works best for him. In order to come home, Eli needs to take all 8 of his feedings in a 24 hour period by either breast or bottle. He is well on his way!

Breathing - just today, Eli was switched from a high flow cannula to low flow. On the high flow cannula, Eli started at 30% oxygen at 3 liters per minute and was weened down to 30% oxygen at 1 liter per minute. With low flow, he receives 100% oxygen at .2 liters per minute. He is doing so much better on this setting and is able to keep his oxygen saturation high! We anticipate that Eli will be on oxygen for a little while after he comes home. Ideally, the doctors want the settings to be 100% oxygen at .1 liter per minute, so we are almost there!

Grandma took this cute picture while looking in on his webcam. 

Bath - with his central line removed and being on nasal cannula, Eli was able to have his first swaddle bath from us! It was probably the cutest thing I've ever seen. He didn't cry at all but just seemed happy to be there in the warm water. Watch the video below to see his reaction:

Update: Here's another video of Eli getting a bath. It's our favorite thing to do! :)

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Grandparent Love

Eli has been showered with lots of grandparent love this week! 

Grandma Orme held him the first time – Grandpa Orme will hold him as soon as he gets back from his trip!

My parents came into town this last week. The nurses took the CPAP off so they could snap a quick picture all together. 

Typically, the NICU won't let anyone but parents hold when the baby is on the ventilator or CPAP. They want the baby to be more stable and on nasal cannula before letting other family members hold. Luckily, the nurses made an exception and let my parents hold Eli since they were only going to be in town for a few days and we didn't know when Eli would be put back on nasal cannula.  

Today, Eli was put back on nasal cannula! So far he is doing well and we hope he won't get tired out from losing the pressure of CPAP. Also, Eli's broviac was removed on Sunday! It is so nice that there isn't anything invasive going into Eli. He is starting to look and act more like a real baby.

Thank you, as always, for all of your prayers and support. Eli is truly our miracle baby and we are so blessed to have him as our son. 

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Nasal Cannula... Almost

Eli was taken off of CPAP Monday and moved on to the nasal cannula. It is so nice to be able to see his full head, he looks like a completely different baby!

Before they put the cannula on him we got to see his face with nothing on it!

Holding is so much easier without the huge CPAP. 

Tuesday I went in to hold again and the doctor said that we could start nuzzling! Nuzzling is basically breast feeding practice, I pump all of my milk out before so he's not actually eating anything. He sort of got it, but mostly just looked up at me like, "what am I supposed to do with this thing?" and then fell asleep. I held him for a little while after but then noticed that his breathing was getting faster and more labored. I was concerned and the nurse decided it would be best to put him back to bed. His blood oxygen saturation was decreasing and the nurse had to turn up the oxygen to over 40%. At that point, the nurse made the call to put him back on CPAP. He just got too tired and needed more assistance. We were bummed, but knew it could happen. Since then, Eli has been doing great on CPAP and the doctors are going to try nasal cannula again sometime next week. 

Eli has been doing phenomenol with eating. His intestines have been working well and he is pooping again! The nurses all cheered for his first poopy diaper. He has been eating the proper amount of milk for his age and they've been giving him less and less fluids through the broviac. Today, the doctor said that he called the surgeon to take out the broviac! That will happen sometime this weekend and we are so happy he won't have anything invasive going into his body. 

Eli weighs 6 pounds 8 ounces now and he is starting to outgrow his preemie clothes. It's hard to believe he has been in the NICU for 75 days - hopefully it won't be too much longer! 

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Surgery #3: Reanastomosis

Eli went under for his 3rd (and hopefully final!) surgery on Monday. We were actually looking forward to this one! The procedure—called a reanastomosis—is done by stitching his two stomas that have been sticking out of his tummy back together and placing them back inside the abdomen. Overcoming this surgery is another big step towards coming home! Jason and I got to the hospital a few hours before the surgery. They let me hold Eli right up until the surgeon arrived so I could have some last snuggles. He was so cute and happy; it made up for not being able to hold him for the rest of the week.

When the surgeon came in, he gave us his little spiel of all the risks that could happen with surgery. We were feeling very confident until the surgeon started explaining there's a 50% chance of him having to do a different procedure. Since Eli's intestines have been split in two basically his whole life, it is possible they are not the same size. If that is the case, the two pieces would not be reconnected. The stoma that is coming off of the stomach would be reconnected at the colon. The other stoma would stay on the surface and he would continue to have an ostomy bag. At nine months, he would go back in for surgery to completely reconnect. This was a huge bummer to hear, especially right before surgery! We left praying and hoping that the stomas matched up so we could officially be done with ostomy bags. Our nurse that day was really sweet and said she would call us from the OR and let us know if the stomas matched or not so we wouldn't have to wait and worry for long. About 30 minutes into surgery we got the call—everything matched and Eli was in one piece! We felt so relieved and happy. Everyone said Eli did excellent during surgery. The surgeon came to speak with us and said the stomas differed in size by only 1mm, which was fine for reconnection. It took about 50 stitches just to connect the intestines. Eli's scar is pretty long and gnarly.

He was pretty out of it for the next 48 hours… poor guy.

It's gotten a lot better, but it's still a pretty crazy battle wound. 

Eli had to be reintubated for the surgery since the pain medication sedated him so much he couldn't breathe on his own. We knew this was going to set him back a little, but once the initial pain medication wore off he, has recovered better than we could have imagined. He is entirely off pain medication and his scar is healing really well. Yesterday, they extubated him and placed him back on CPAP! His blood gases have been amazing, and the doctors predict he will be on a high flow nasal cannula next week! This is a HUGE step and we are so excited for our little guy. On nasal cannula, he can start breastfeeding, get baths, and the grandmas can finally hold him!

He is so done with this CPAP. (I just realized that CPAP looks like CRAP, ha ha)

Today, Eli will start to be fed orally again. Ever since surgery he has been getting nutrition through an IV. We hope that his intestines function properly and that a stricture has not formed where the intestines were stitched together. A stricture is formed by excess scar tissue and it decreases the diameter of the intestine at the surgery site. The surgeon explained it to us as a highway being closed down to one lane during rush hour. If a stricture occurs, surgery will need to be performed again and we will basically be back to square one with stomas and ostomy bags. So far there have been no indications that a stricture exists, and we keep praying it stays that way!

This has been a huge week for Eli and he has made more progress than we could have hoped! Next step: learning how to eat. 

By the way, he's over 6 lbs!

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Lots of Progress

Eli has been able to stay on CPAP this entire week! We've been so happy and excited with his progress. The doctors have slowly weened down the pressure support of the CPAP and Eli has been tolerating it really well! The only bummer about CPAP is not being able to see much of his face since the system requires a bigger tube. We call him our little rhino.

Eli also hit 5 pounds this week! Such a big accomplishment since it is more than double his birthweight. The doctors are amazed at his ability to gain even though he is unable to process the full nutrition of my milk because of his intestinal issues. 

An occupational therapist works with Eli every few days and says that he has developed really well. His motor skills are better than most at his age - he can even interlock his fingers together! He also is really strong and has great muscle tone. When I hold him, he can lift his head entirely off of my chest for a few seconds. 

The doctors are thinking about reconnecting Eli's intestines. A surgeon still has to come and evaluate him to see if he is ready, but we anticipate it will happen in the next week or so. We will keep you posted and as always are grateful for your continued thoughts and prayers. 

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Third Time's the Charm

Here is a recap of our week. We've had lots of big changes!


Monday: The doctors wanted to start refeeding the stool that comes out of Eli's ostomy bag and put it through the second part of his intestine. Eli was sent down to radiology for a test to make sure there were no strictures or perforations. It was a little scary because this was the first time that Eli would be leaving the NICU, even if it was just to go to a different floor of the hospital. Once Eli was down in radiology, contrast was inserted through his intestine. Then they took an X-Ray to see if the contrast made it through the length of his intestine. The nurse said she thought everything looked normal, but the official report would not be in until the next day.

Tuesday: The radiology report showed that all of the contrast went through the intestine and there were no strictures or perforations! That part of his intestine is just a little smaller than the rest, but that was expected since he really has never used his entire intestine efficiently. The refeeding process sounds a little strange. The nurses use a syringe to pull all of the stool out of the ostomy bag. A catheter is placed into the second opening. Then, the syringe is placed on a pump that slowly pushes the stool in.

Refeeding the stool on the pump.

Wednesday: Eli has increased his weight quite a bit (he's 4lbs 7oz now) and as a result has been able to monitor his temperature better. The doctors decided that he was ready to move out of the isolette and into a crib! They made the switch while I was holding him. He seems a lot smaller now that he's in such a big bed. Eli also had his first dirty diaper which was a good sign since they started refeeding.

Thursday: Every day Eli gets a chest X-Ray to see how his lungs are doing. The X-Ray showed that there was a little bit of haziness. When his happens it means he has too much fluid in his lungs. The doctors decided to give him a diuretic to help flush out the excess fluid. As a result, Eli lost a little bit of weight and also electrolytes. The doctors were thinking about putting him on CPAP since he was doing so well on the ventilator, but they decided to wait because they wanted to make sure he was gaining instead of losing.

Friday: Eli has maintained his weight, but ever since he has moved to the crib he has been a little on the cool side. If his temperature goes below a certain point, they will have to put him back in the isolette so he is not working too hard to stay warm. At this point, the ventilator settings were low. The doctors still wanted to wait to make sure that CPAP was going to be a success.

Saturday: Jason held Eli today since I hog him during the week :) Eli loves being held by Jason and his oxygen had to keep getting turned down! The doctor still didn't think he was quite ready to go off of the ventilator and wanted to wait and see what his blood gas was going to be in the morning.

Sunday: Jason and I called the NICU on the way to church to see how he was doing and the nurse said, "oh he's great, he's been on CPAP for about an hour now." Jason and I both look at each other like, what?? We thought we would have received a call before they extubated him, but I guess not! After church, we went up to the hospital to see how he was doing. He looked much more comfortable than the last CPAP attempt. The poor little guy had to have an eye exam too so his eyes were all puffy. I guess the only benefit of the eye exam, even though he hated it, was that Jason and I heard Eli cry! I cried too. It was the first time we had really heard him cry except for the little wimper he let out when he was first born.

His face looks chunkier than it really is.

Now he can actually suck on his pacifier.

We hope this time CPAP was a success and Eli won't have to be reintubated. We will keep you posted!

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Keep On Keepin' On!

After going back on the ventilator, Eli has been doing great! He is up to full feedings of milk and steadily gaining weight (4 pounds 5.9 ounces!) The doctors were fortifying his milk before and now they have stopped because he is gaining weight too quickly.  His blood gases have been really good and we anticipate that the doctors will try him on CPAP again in the next week.

We enjoy this sweet little boy so much! Already he is developing a personality and showing us more facial expressions. Here's a video Jason took:

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