We Be Trippin': July 2013

Tuesday, July 23, 2013

NICU- weeks 6 and 7

After a very eventful week 5, we are grateful to report that weeks 6 and 7 have been much better. We have been able to experience lots of wonderful milestones this past 2 weeks. First of all, Miles was taken off of the ventilator 5 days after the pneumonia, and was then still in an isolette with IV fluids, antibiotics, and oxygen. His brother Jaxon and sister Lilly had both by that time graduated to an open crib! (YEAH!) They must be about 4 pounds and regulating their own body temperature/vitals to qualify for an open crib. That was a huge milestone, as it is so much easier to see them and interact with them in the open cribs, so we were thrilled! Miles continued to progress and was taken off of the IV fluids/antibiotics, and began to slowly go up in feedings, he is a little behind the other two, but is definitely doing SO well!!! Miles and Jaxon were both put back on to the Vapotherm (a higher flow of oxygen). Just yesterday they were weaned off of it, and put back onto room air with .1 flow. The Vapotherm has heated moisture that helps their nose not to dry out with the higher flow of oxygen. On Vapotherm the flow of oxygen is anywhere from 1.0-8.0. We want LOW flow, so we were excited when they were able to wean them off of the higher flow down to 0.1 oxygen flow (also the big tube associated with the Vapotherm is pretty obnoxious!) The boys developed a nasty looking rash last week that has since gone away-Wahoo! The biggest milestone though for these past two weeks, is that Lilly, Miles, and Jaxon have been starting to eat on their own. In order to go home, the kiddos follow a 4 step process in eating (can go quick or take FOREVER, depending on the baby and their readiness). Step 1- baby must eat 2 times (1 per shift) 75% of what they normally would eat with a feeding tube, and continue to gain weight. Step 2- 4 feedings on their own, 75% without needing to be gavaged, Step 3- 6 feedings, and Step 4- all 8 feedings on their own. We are now to the point where the kids are at least nursing 2 times a day and some of them are taking bottles at other times. Miles is still at step 1- 2 nursings a day, almost ready to add in 2 more feedings (bottle). Jaxon is at step 2- 2 nursings a day, 2 bottles. And Lilly is pretty much on step 3- 2 nursings, 4 bottles. When they do not eat on their own they receive their feeding through a feeding tube. As far as weights go- today they measured Lilly- 4pounds 15 ounces, Jaxon- 5 pounds 3 ounces, and Miles 4 pounds 3 ounces!!! It is so amazing to watch these little ones work SO hard and make such process. Phillip and I continue to be so proud of them and they are just little fighters!!! We have even been able to try tandem nursing a couple of times- wow is that tricky! We are so grateful that this has been a good two weeks. I told Phillip the other day that after having the hard times you understand why you have them, so that you can relish the good! We love all of you so much, and thank you for your continued thoughts and prayers! We love our little ones so much!

Jaxon sleeping

(Jaxon) Phillip and our nurse joked that we have a future synchronized swimmer on our hands.....

We peaked in at Jaxon, and he had some major crazy hair going on!!!

(Jaxon) Caught a smile!

Lilly sleeping

Our wide-eyed girl

Lilly with Daddy.

Lilly had been sucking her thumb and as soon as I brought the camera over to snap a shot, she said "talk to the hand"...

Miles snuggling with Daddy

Miles chilling in his new open crib!!! He graduated to a big boy bed, wahoo!

Miles sleeping.

Miles loves his binky!

Tuesday, July 9, 2013

NICU- week 5

Wow. What a week, to say the least. If ever there were ups and downs in the NICU experience, this was the week that best illustrated it. This week marked some also very exciting milestones. I will start with the definite positives- Jaxon and Lilly have both broken that 4 pound marker! They are regulating their body temperatures well, and continue to grow very well, so they are both in open cribs! Yay! The kiddos were all still on oxygen this week, which is not a surprise as they have continued to increase their feedings, which is great! They all have also tried to nurse or practice feed. They have all had good and bad days as far as the non-nutritive and nutritive feedings. So far the best has been Lilly with one day doing some nutritive feeding for about 8 minutes! We have tried some with and without the nipple shield, and it seems that there is no consistency either way, the kiddos just make up their mind each day! :) Well, along with the very exciting milestones came some very scary moments as well. Particularly with our sweet Miles. The nurse called us at about 1am on Sunday and said that he had an episode where he stopped breathing and heart rate dropped (which because of the apnea that all of the kiddos were having was not uncommon) but that this episode was different, he did not come back without stimulation from the nurse. She said that he recovered with her help though. Well they called us again at 7am and let us know that things had just continued to go downhill, and that they were moving him back to the admitting room (not a good thing) and would be intubating him again. We arrived there shortly and they moved all three of them to the room to be with Miles, so that we would not have to go back and forth in between two different rooms. Well, Phillip stayed to watch the procedure but I went with Jaxon and Lilly behind Miles curtain. I could still hear everything, and it was pure torture. He was fighting them so bad on putting the tubes in that they eventually had to sedate him. At one point he crashed, I could hear the nurses running around, and knew that it was not good. Later Phillip had told me that was when our sweet Miles had crashed and that they were trying to revive him- pinching him, chest compressions, and were running to grab Epi to bring him back, but that right as they were about to administer, he came back. Not something that you want to view as a parent. They continued to run test after test on him (x-rays, echocardiogram, bloodwork, etc.) Because of various factors, and his poor little body just not having the reserve it needed to fight as it needed to, he received a blood transfusion later that day. We gave him a blessing and prayed with all our heart that our boy would be able to stay with us. What a day. The next day, the doctors told us that he had pneumonia. Several days have gone by now, and he continues to be on the ventilator, IV fluids, and anitbiotics, hoping that his little body can fight off this illness. My husband and I are so grateful for having answers after a horrific day, and continue to pray with all of our loved ones that he will continue to heal. Each day he continues to fight is another day blessed by God. We are grateful for all three of our fighters, we are so proud of them each day that they can get stronger and we love them more and more each day. We are also so blessed to have the support of incredible people in our life, who help us to hold burdens on hard days and celebrate the beauty of miracles!

Daddy with Jaxon

Our big guy Jaxon

After a long day, we needed some comedic relief, so I put a blue bow on Jaxon to see if Phillip would notice.....

Miss Lilly

Mama with Lilly

Lilly loving the new crib

Our sweet Miles holding Daddy's finger

Our little fighter Miles

Tuesday, July 2, 2013

NICU ***first four weeks

Wow! The babies are now just about a month old, and have been in the NICU for 4 weeks. Each of those weeks has proven different. The first week that they were there they improved quickly. They were all off of the respirator the night that they were born. They lost some weight which was to be expected. They were also filmed that week as part of a news story about placental blood draws (a new procedure pioneered by a great doctor in our NICU). Because the triplets had this done, they were interested in getting some footage of them for the story! The second week came and they were all doing phenomenally well. They were tolerating their feedings, did not need the bili-lights, had started protein supplements, had been given caffeine to help with the apnea, were coming off of the vapotherm oxygen, and doing well. The third week, was a very difficult week. Miles heart rate was inconsistent, he would be up at about 230, then at times down to 50, they ordered an ekg and echocardiogram to see if they could find anything. Dropping down could be explained by the reflux from his feedings, and thus he would hold his breath in response. But the doctors did not know why he was having very high heart rates. We were sitting in church one day and got an emergency call from the NICU, that Miles had gone downhill. He was not recovering from his heart episodes on his own, and needed the nurses in order to make it back up. We drove down immediately and could tell instantly that he was not doing well, he would go blue and was having these episodes frequently. Phillip gave him a blessing, and we hoped and prayed that he would start to improve. The following days proved to be gradually better. That same week, Lilly's intestines were looped because of intolerance to her feedings, and the boys (having been off of oxygen) went back on it. Needless to say, this roller coaster of emotions was a very difficult one. But we are grateful to say that week four proved to be much better. The babies all went up in their feedings, we were able to start non-nutritive practice feeding, and they are growing at a promising rate. We are humbled by the hard work of these small babies and are so proud of them every day! We love you so much Miles, Jaxon, and Lilly!!!