He is Really Awake! Day 41!

2 lbs 4 ozs 

We have been seeing some steady weight drop, anyone know why? We sure don't ecspecially since he has been started on that fortified breast milk. Either way he is still rockin away. They are giving him 19ml breast milk every 3 hours, he last feeding that we were there to see showed that he had ingested all of it with nothing left in his belly. The high flow o2 is still doing the trick for him, he still has a couple heart rate drops but he immediately recovers from them. Mom held him today and he was really awake on her. Moving his head all around and just keeping his eye's open a lot. Eventually he fell asleep and so did Holly and I, we both crashed, something finally woke me up, and I ate some food then woke Holly up just before 6 when the nurse came back in to put him back in the isolett. Almost guarantee no post for the weekend, I work, Holly is going to try to be at the hospital by 9am tomorrow. We have a busy weekend ahead so there just will not be time. See you on Monday. Goodnight. 

Moved! Day 40!

2 lbs 4 3/4 ozs

Weights been back and fourth last couple of days. He is still holding strong today. He does appear that he is having a few episodes of his heart rate dropping down but for the most part it seems to be positional more than anything. They move his o2 around from 21% to about 25% throughout the day but otherwise it is the same as yesterday. They moved our room, we are officially in 2056 now. He is up to like 19.8 ml of breast milk every 3 hours now, he seems to be tolerating the increased kcal well at this point. 

I decided that I would hold him today. I held him for about 2 hours. He was having some difficulty with his temperature at first but quickly improved when the put the hat on him. It was nice to hold him, the downside was the new room had a broken chair and I couldn't recline. It got pretty uncomfortable pretty fast but I dealt with it, hopefully tomorrow we will having a working chair. 

Back in his isolett after holding him. He let out a big yawn, he was moving a lot when he was on me, so he was probably tired and ready to get some good sleep. 

At this point, no news is good news. We are just hanging out at this point with no real changes and he is doing really well. Hopefully get some time with him tomorrow, unsure at this point I have had some schedule changes. Goodnight. 

Big Surprise! Day 39!

2lbs 5 3/4ozs

So much is happening so quickly and we are more than fortunate to having God and support from our family and friends to help us through all of this. Blood test today were all great. He remains as he was with no IV's or accessories in that department. He continues to be on breast milk through the oral gastric tube (OG) which he continues to tolerate, he is getting 17cc of milk every 3 hours. As of tonight's feed they are starting to fortify the breast milk with a supplement which will increase the kilocalorie(kcal) value of the milk. Normal breast milk is around 20kcal per milliliter of milk, they will start by enhancing it to about 22kcal per milliliter. They will continue to increase it until in about a week as long as he is tolerating to around 28kcal per milliliter. This is to supply a fuel source for him to breathe and grow as fast as he possibly can. I am banking that tomorrow he will be at 2.6lbs and if he is, then we will have officially made it to 1 pound up since birth. According to hospital calculations he is at 32 weeks. I really had no idea that they were considering him to be at this age but that is what they are saying and it is how they are treating him. 

Holly called me and told me when I get to the hospital that there was going to be a surprise and there was. Check out the above picture of Calen and note the new tube in his nose. This is a nasal cannula. He is getting absolutely no positive pressure assistance anymore. He is getting what they call hi flow 02 through this which equates to 3.5 liters of oxygen coming though a machine that mixes it with regular air to give him a 21% oxygen supply and the air is also moistened and warmed before coming to Calen. We do the same setup for adults but just to show you a comparison to size, the typical adult on high flow o2 system would use around 35-40 liters of 02 versus 3.5 liters to obtain the same 21% ratio, amazing the difference. This is so awesome, we found several things exciting about this. 1. He is tolerating it extremely well, he has been problem free all day on it. 2. This places us very close to being move down to the 1st floor NICU which is for less sick babies  and I am hoping the visiting rules are little different and Joey might get to see him, unsure on this though. 3. When we kiss him on the head, we don't have to kiss oxygen mask straps along with it. 

We didn't expect this at all. Holly and I figured he would stay on CPAP for a while before the transition, but here is the quick story on why he arrived to high flow o2. The machine he had in his room was a SiPAP which  was just operating in CPAP mode, well they needed the machine for another baby so they were going to put an actual CPAP machine in his room but the doctor this morning felt it would be better just to start him on high flow o2 and see how he handles it, so they did. So far so good so please pray that his little body can hold out and continue to breath on his own without any machine assistance. 

Holly held him for about 3 hours today. When they were putting him back and started his assessment he became really wide eyed. It was cute he kept his eyes open for sometime and was just moving his head all around. He is building a lot more strength, such as when he is laying on mom or in his isolett he can pick his head completely up off the surface and move it side to side, it is pretty impressive to watch him do it. He is so cute.

During the assessment with his eye's wide open. Nurse coming at him with a thermometer. 

Terrible picture but only to state a event. Tomorrow they are planning to move Calen from his room we have been in since birth and move him down the hall to room 2056. The neighbors babies are no longer there, they transfered the last one on his hall to children's hospital today. So since he has been all the way on the end of the hall they are moving him down closer to the other babies so that the nurse is in a more convenient area to take care of others. 

Holly had her doctors appointment today that was to decide whether or not she needed to remain on blood pressure medications and the answer is NO. Her blood pressure has stayed down in the 120's without medications so she is good to go without. 

Just to update you on Joey. The other night Holly had went in and started to run the bath water for him. We told him to get ready for a bath so he started to take off his clothes and apparently he was becoming to impatient for this as he decided to remove his shirt and shoes and then go ahead and get in the tube. Ahhh the joys of toddlers. 

I will be at the hospital Thursday and Friday so I should updating those days. 

Thanks and Goodnight. 

Rest and Grow! Day 36!

2 lbs 5 ozs

We are continuing to see steady weight increases. His breast milk infusions are being tolerated really well. His bowels have been moving well and is having regular bowel movements which are all great signs of a good and working gastrointestinal system. 

Calen doing some resting when we came in. He is very quite and peaceful. We are so incredibly thankful that he is doing so well. At this point he is no longer receiving any assisted ventilations from the SiPAP, he has no IV's or PICC lines, he is tolerating breast milk like a champ, he is growing, he is truly making waves at this point. 

 Nice close-up of the little man.

Eye's wide open. Once he was on mom today he started opening his eyes a lot. He finally settled down and went to sleep and stopped but at first he was really opening up for us. I really like it when he open's up his eyes. 

Well we are completely off all TPN and Lipids and strictly on breast milk. He remains today at 13.8 ml every 3 hours with a plan to increase to 14 something later tonight. He did have a IV placed a few days ago in order to give him blood, they gave him 2 transfusion's so hopefully that will easily sustain him. After they resumed his feedings, he did have some spit up and his belly was distended some so they held his feedings for a few hours and then resumed them at the 13.8 ml. It is so nice to see him in there without any IV's or anything in, it really frees him up. 

There is brilliant silence in Calen's room today that we were not expecting and it was awesome news, they were no longer giving Calen any ventilatory support on the SiPAP, the machine was simply functioning as a CPAP. Hopefully in the next couple days he will be able to actually go onto the CPAP, how awesome is that. He did have some redness on his nose which was being created by the nasal prongs rubbing his nose, they took them out for a few hours to give his nose a break and have since reinserted them. 

Last week there was really cute linens on his isolett, they changed his isolett linen again recently and it is so drab but I suppose that is ok, but you know people just prefer cute stuff. 

More Blood, New IV! Day 33!

2lbs 4ozs

Just mom made it to the hospital today. Normally when I am at work she and her sister go together. Her sister became sick around 4:30 this morning and she was unable to join in the ride to the hospital. Mom stayed for a good while, holding him and was there for 2 assessments today. I may be sick, unsure. I think I might have to go to the doctor tomorrow which will require taking some time off work so I don't know yet. I think I have strep, probably picked it up from Joey. I have had a sore throat which has gotten worse and my voice is getting softer and softer. I don't think this is something I would normally deal with, at least not till it got really bad, but with Calen I have to, if I am sick I can not see him or I put him at risk of becoming sick and mom and then nobody will be there for him , geesh, complicated stuff. Better just go to the doctor.

Calen blood work today showed a decreased hemoglobin and hematocrit so that means another blood transition in the morning. With every blood transfusion comes a NPO (nothing per oral) status and there for his breast milk is back on hold. There is another problem related to this and that is they removed his PICC line just today. So they have had to restart an IV in his arm today and restart his TPN and Lipids until after the transfusion is in tomorrow.

Holly said that Calen is starting to make so much more noise. When he used to be irritated he wouldn't really respond to it, maybe move his arms around or something. Now when he is irritated he cries out. All that crying is so good, he is growing and he is expanding those lungs.


Yesterday they removed the prongs from his nose to give his nostrils a rest and just had a mask over his nose on the SiPAP. It did not work so well for him through the night, apparently the pressure was actually causing some nose collapse and therefore restricting his airway, so they had to replace the nasal prongs this morning. In the all and all, he is maintaining most of the time on 21% oxygen on the SiPAP, so I am predicting that they will attempt lesser respiratory support such as a CPAP next week, don't know just guessing. 

Goodnight!

So Much Changing! It's actually day 32! I Apparently Lost Count!

2lbs 3ounces

We are back on line everybody. Wow it feels like it has been forever since I have been able to post. Lots of news to bring to you guys so be ready for a long read. The weight chart, is an issue of it's own. I never realized that my graph was going to be problematic till Calen hit 2 pounds. We then noticed that the graph was not interpreting my data as pounds and ounces and therefore didn't deal well with the number 2 being plugged in there. I worked a couple days on the best solution to this and above is my solution. His weight will now be written in the graph in ounces only. This way the line graph actually trends right. I will place in bold right below the chart (as shown) his weight in pounds and ounces for simple viewing.

Calen remains on the SiPAP for his breathing. He has been on this for well over a week now and has tolerated it very well. There has been no talk recently about changing his oxygen supply but I am really hoping that soon they will. I would love to see him down to just the CPAP again till 32 weeks, and the CPAP is much quieter than the SiPAP (it's a pretty noisy machine). 

Once a week starting yesterday a ophthalmologist comes in and see's Calen. They dilate his eye's and they examine his retina to check for the extent of a known problem called Retinopathy of Prematurity (ROP). It is staged in 4 categories, 1-2 meaning no intervention required 3-4 intervention such as laser surgery to stop the swelling of the retina may be needed. He ranked a 2 on his first check. They will come back every week until his eye's have matured or he goes home. ROP normally presents no long term problems, blindness is extremely rare. He may have to have corrective lenses or do eye exercises later on to correct abnormalities that have occurred due to prematurity. 

Calen is still experiencing some generalized edema. The doctors are all aware that he is swelling up some but at this time are preferring to not treat it and see if it will decrease on it's own. Since last week when he had his last blood transfusion he did have some lasix then to help pull fluid off but none since then. In the all in all it really isn't to bad and it should be fine. 

This is Calen's IV pump that has been supplying him with his TPN and Lipids. These have been essential since birth in order to provide him with enough fat and nutrients to live off of. He has been on a amazing increase on his breast milk feedings. Today we are giving him 13.8ml of breast milk every 3 hours. This is a lot, he is well over 100cc in a 24 hour period and therefore the goal for the day will be to ensure that he is tolerating and absorbing all of it and then it will be time to stop his TPN and Lipids. Once the TPN and Lipids are stopped they can remove his PICC line from his ankle. This is such amazing progress and it has all happened so quickly. 

Look at all that breast milk he is getting. It does mean one other big thing and that is mommy has a lot of work to do to make sure he has enough milk to meet this demand. 

Calen is growing so much. We can see it in him everyday. He is starting to look more like a baby (he looks just like Joey did as an infant), his skin is becoming opaque and he moves around  a lot. He was sucking on his thumb when mom was holding him here. His skin color is improving, it is becoming much less red as it was before. He is also becoming noisier, we hear him cry out a lot more, so he is growing and moving towards the life of a normal newborn. He is still being held every single day by mom. She has been holding him up to 4 hours lately. It's definitely the highlight of her day and I am sure his as well.

As seen on facebook, Joey has made the transition to a toddler bed. We have had the bed since last summer, picked it up off Craig's list. He has a fire truck themed room and so this was of course needed. We were truly dreading this because we didn't think that he would sleep at all for a while, but the very first night he slept without a problems, and the next night still no problems. It was instant success, we couldn't believe it but were very happy that he took to it so easily. Joey is still on antibiotics that he has been taking for the strep throat that once again we are thankful that he has had no symptoms associated with being sick. 

I have been working the last couple nights putting up the wall in the extra room that will be Calen's when he comes home. Be glad to get that done as soon as possible. Tonight there will be dry wall up and the door will be in so just have to get the dry wall mudded and pained, trim it all around and then start painting the inside of the room, and putting the crib back together. Fun stuff. 

We covered Calen up today with a blanket that was given to us by Aunt Jan. He might like the soft blanket versus the hospital blankets which are kinda rough. Be preparted for more blog downtime. I go back to work Thursday and Friday and have to work on the wall when I get home at 8pm. Then gone Saturday and Sunday to Army stuff, then back to Work the next Monday and Tuesday. 

It's Been a Whole Month! Weight Changes! Day 24, 25, 26, 27!

Calen is 1 month old today.

Good evening everyone.  I am so sorry for the decrease in blogging, I have been super busy and just have not been at the hospital. Holly has been going there so we have all the updates. I am not posting a weight chart today, excel and I are not getting along and I just realized that it does not understand I want to display lbs/ounces and I have not figured out how to fix it.

On the lighter note (well heavier actually )

Calen weighs 2lbs. 


We are very excited to see this increase and it is definitely a sign that he is doing awesome and that everything is working in his little body. He is still on SiPAP and tolerating it really well. His feeding continues and he is up to 7.4ml every 3 hours. All this increase is allowing them to back down his TPN and Lipids, so because of all of your prayers and thoughts, he will sooner than we know be just taking breast milk.

Congratulations to our brother and sister David and Ashley who just had there second child. Welcome to the family Haddie Nichole Gilpin. 


I will be back to the hospital on Monday, hopefully on Monday I will have a more significant and picture focused blog post since I have been slacken lately.  


I want to thank all of you who have been frequent readers of this blog. It truly means a lot to us knowing that so many people know our story and bring us your prayers and thoughts, it really has made this journey tolerable and comforting. There are so many people to thank at this point. We have received so many words of support, many gifts that have been food, gas cards, and finical support, babysitting for Joey and all of this we never expected to receive and never really asked for but our friends, family, and complete strangers have helped us in all these ways. We again cannot express the gratitude needed for your gifts, we are using these to help us through this journey and to prepare for the day when Calen will come home to us.

Most likely there will be no post for Sunday, so I will talk to you all on Monday.