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.

Day 24

Calen's weight is stable today. He actually lost about 10 grams but for all practical purpose there is no real change. He is receiving 6cc of breast milk every 3 hours now. This started today and he seems to be tolerating well, they are giving him that 6cc right now as we speak. They are going to assess him and then I will be holding him today. This will be my third time and how long he will be out will just depend on how long he is able to hold temperature. He continues on the SiPAP and is still tolerating that really well, he does require a lot of suctioning to keep his airway clear but as long as they do that, he is really stable. 

Holly had a doctors appointment today. It was really just to check her blood pressure. Her pressure was 118/80 so they are once again decreasing her blood pressure medications down to twice a day and then we will check it again in 2 weeks. We are going to reduce down to once a day in 1 week and then not take it at all the day of her appointment to see if her blood pressure is fine then, if it is we can stop taking it all together.

Calen this afternoon when we first got to his room. He still has a lot of dependent edema. The swelling started in his legs and is now moving all over, I believe this is still normal, normal for swelling anyhow. They said that his swelling is in which ever area is the lowest, elevate his legs, upper body swelling, and then so on and so forth. With all hope and prayer he will just start loosing the swelling and we don't have to worry about it 

Dad held Calen today. Only my third time holding him. I am making waves though I was able to hold him for about 2 hours and his temperature actually went up and not down and we didn't need 15 million extra blankets. It was enjoyable, I think Calen liked it too. He sneezed like 5 times though, hope he is not allergic to me that would be bad!!!

Holly captured this nice candid shot of me and Calen. I really liked it, she did a great job. 

About every 14 days they do an isolette change in the Calen's room. Once they bring in a new isolette they swap everything out. They get new bulb syringes, stethoscopes, blood pressure cuffs, thermometers, tape measure, tubes, and suction, all nice new stuff. I really like his new isolette it has a different outside cover, picture will be up tomorrow. 

I wanted to post this picture yesterday but I forgot to. We were very tired, Holly was falling asleep with Calen, I was falling asleep, and then I have no idea who took the picture. It is kinda hard to sleep there though, I have a tiny couch I do not fit on length or width wise, I had to add a rolling chair to hold my feet. 

Joey has his 2 year appointment tomorrow so we will get to the hospital late and we will have Joey so it will limit the time we stay at the hospital. Goodnight all!

Back to the Good Side of the Roller Coaster! Day 22 and 23!

TEE SHIRT ORDERS! I will be sending out for an order of the shirts. If you want some please let me know. They are $8 each. Send me an email if you want one. Thanks.

I am sorry that I am a couple days behind on posting. I am here to tell you if I work, I really don't have it in me to sit down and get a post together. So I will be more than happy to catch you all up today. Weight chart above is unbelievable. Just 3 more ounces and he will be at 2 POUNDS. Just the thought of the number 2 is so exciting, it is a true sign of improvement. Every time we look at him though, we can tell that he is getting bigger and his skin is starting to get smoother and his color is much more natural. Calen is up to 5.2ml of breast milk feedings every 3 hours running though the OG tube, he is absorbing it well and he is having significant weight increases because of this. They have started to decrease his IV TPN and lipids also, so with all prayers he will be off TPN and lipids in about another week. He has to be getting 80ml of breast milk in a 24 hour period in order to shut off the TPN and lipids. 

Yesterday March 7, this was Calen's last day on the ventilator. They decided that they would extubate him and put him on the CPAP and see how he did. After correcting his ET tube the other day he did really well over a full 24 hour period making it seem that he didn't really need it. 

So here we are on March 7 with the CPAP on. He went for about 3 hours on the CPAP. The first hour went well, the second hour he experienced a multitude of apenic spells and heart rate drops, he was doing a really good job of bringing his heart rate back up on his own though. It seems as though the 2nd hour was so hard on him that he was to tired come hour number 3. So the 3rd hour he had less spells but he was struggling much more to recover from them. 

They decided to place him on the SiPAP. This is what he was on before they decided to put him on the vent a couple weeks ago, but since he has been on it, he has not had any problems. We are really happy that he is tolerating being off the ventilator now and we ask you all to pray that he is able to stay off. 

This was during his transition phase. They had both machines in the room as they were deciding which machine was going to be the most appropriate for him. 

If you look at this picture, he is a weird position. His legs are all elevated. He started getting some swelling in his legs and honestly in this picture I can see the swelling in his leg. Yesterday the swelling was pitting edema (you could push on it with your finger and it would leave an imprint). They decreased his overall amount of IV fluids and are decreasing the sodium in his TPN to help him get rid of the excess fluid. His chest x-rays have been clear, not showing any fluid on the lungs. They said that this can be normal in prematurity and sometimes has to be treated with diuretics (medicine that helps get rid of excess fluid). Elevating his legs have helped drain the fluid out of his legs and they are also giving him 5 minute leg massages with each assessment to help decrease the fluid in his legs. 

Moving Quicker than we Thought! Day 22

Sorry no pictures tonight, the site is working very slowly and my images are not showing up correctly. His weight is still rising, he is at 1lb 10oz today. Holly held him again for about 3 hours. They have him at 3cc every 3 hours of feedings and is tolerating really well. His breathing has been great and we thought it was going to be another week before they would attempt removing his breathing tube but they are doing it TOMORROW. They started him on caffeine again today to prepare him, so pray all morning for a successful extubation. Goodnight!!

Rough Start! He is 3 Weeks Old! Day 21!

Weight looking good, he is up a few grams today. Feedings are still going they have increased him from 1cc every 3 hours to 2cc every 3 hours. Holly and I are both with him today, Joey was supposed to be going to jumpies today so I am sure he will be excited about that. We got to Calen really early today, much earlier than we ever have. We got here at 9:30 this morning. We got up early so that we could go to Wright Patterson Airforce Base in order to add Calen to my military dependents. I have been to the facility that does this stuff twice and both times I have waited like 5 hours because the place is always really busy. They are open from 9am till 1pm one saturday a month and this was that saturday. We left early so we could get there early enough to get in line so we didn't have to wait forever. We got there 30 minutes early, and then they let us in the building earlier than 9 and then got Calen added to the system really quick and I was back on the road at 8:59 this morning, I was completely done before the placed was supposed to open. So if anybody wonders why my facebook say's I love the Airforce that is why!!

Upon arrival Calen was laying on his side in the incubator doing all the things he is supposed to be doing. Wasn't a few minutes after that his alarms started going of because his blood oxygen levels were dropping and then his heart rate started dropping and there was nothing stopping it, he just kept declining, normal he comes back around with some encouragement or manual bagging, but nothing was working. They called in the Respiratory Therapist (the ladies in green) they decided to pull out his intubation tube thinking that it had come dislodged, turned out it was full of mucus and it had finally fully closed off the tube from air passing through it. There is really no way of knowing this without pulling the tube so it was great that they did. 

They quickly got a new tube placed and then confirmed it's placement (the nurses listening for equal breathe sounds) the RT continued bagging him to catch up his breathing, he went without much oxygen for probably 2 minutes, I mean by the time they had the new tube in he was down to like 19%. I definitely cannot say enough about them, they worked so well together, everybody was calm and they had him all fixed up in no time. 

After the new tube was in, they suctioned him out with a french catheter to get way down towards those lungs and clean his airway out. After that he was of course in a really bad mood, they got him all settled back into the incubator and tucked him all in so he could rest and warm up as he had lost a few degrees in the process of being out in the open. 

Here he is with the new ET tube in place and him breathing a whole lot better. I almost think this event was good. He has been having a lot of breathing trouble even since he has been on the vent and they couldn't really tell why, well it could have been because he was working off the reduced work flow of the vent because his tube was clogging up. Since the new one has been in, he hasn't had to may issues with breathing or heart rate drops so hopefully he will start coming back around this next week and they can take the tube out . 

 They had to shoot a quick xray to confirm the placement of the new ET tube. We had to leave for a bit while they did this. 

The doctor came in today during medical rounds and talked to us. We asked about the blood cultures and the antibiotics and he said at this point that they have had no growth on the blood cultures which is good, they continued his antibiotics due to not really knowing if he was infected or not , he has 3 more days to go on the 7 day regimen so they said they would just finish them. There is talk that they might try to extubate him this coming week and get him back on the SiPAP or CPAP but there is still a lot of uncertainty in that. For the time being I hope all together with the tube changed and the antibiotics working at there peak that we start seeing some large improvements. 

Really happy that he is stable enough to be held again. Holly is doing really well, she has been holding him for almost 3 hours now. She had to skip lunch to do that but she was more than willing. They tried something a little different today. Normally the nurse just opens the side of the incubator and pulls Calen out and places him on Holly, the nurse today raised the top of the incubator up and dropped the sides and then just let Holly pick him up and then sit down. It was much better, they didn't have to unplug a bunch of hoses and he rested a little better on Holly since she got to arrange him while standing up.  

Altogether a decent day. I am slightly upset in that I had my heart set on a Big Mac Extra Value Meal for lunch before I miss out on the $3 deal but since we got here so early, we didn't get to pick up lunch prior to coming. Oh well maybe another day! Hope everyone has a good rest of the day, is it still raining?